Calling all TNs

SpiritBlessing

Evening Sisters,

Whew...what a whirlwind of a day. So the results of the biopsy shows the lymph node is the same TNBC...so God will take me on another journey. Not the news I wanted to hear at all. So for now the plan is I am off the study trial that I had been on. My MO says it's been really good for me and has done a great job but now it has failed and its time to move on to another treatment. She wants me to take a couple of weeks off to clear out system and is recommending a few options. One is Xeloda which is a pill. The other is Eribulin infusion chemo which is on a study trial as well. Anyone have experience with these?

God will be with me on this journey too. It is discouraging I must admit and it makes me sad. We are going tomorrow for our camping trip and it is supposed to be a nice weekend...thank God! It will be nice to take a break for. My treatment and pills. But it will also be very odd to not have my pill to pray over. The doc said I can take 2 or 3 weeks and it would be fine and I will make a decision on what I need to do. I will be praying for God to give me wisdom and clarity in directing my decision. She gave me some info on the drugs and so I will be doing some reading after we get back on Sunday.

I plan to spend some time this weekend connecting with my soul and spirit and getting back on track and grounded. Today was tough but I know it won't last long. I have to keep my eyes on God and stay focused and positive.

Lucy

Honeytagh

Hi Lucy

I know this can be really tough but you can manage it. I m sure everything will be okay soon. You are always in my heart and prayers. I send my love and prayers to you.

Honeytagh

Hi Lucy

I know this can be really tough but you can manage it. I m sure everything will be okay soon. You are always in my heart and prayers. I send my love and prayers to you.

slv58

Lucy, prayers and hugs hon. I'm so sorry you are dealing with this but feel your grace, inner beauty/strength and faith will see you through with the right decisions. I'm happy you will be going camping and gathering strength and calm. I'm sorry I have no knowledge to share with your chemo choices but am sure someone will offer some soon. Lots of love,

Shari

Luvmydobies

Lucy, I'm so sorry you didn't get the results we were all hoping for. I'll continue to pray for you. Please keep us posted! Enjoy your camping trip!

Arlene, thinking of you today and praying as you start chemo. Let us know how you did.

Meadow

Lucy, I am sorry you are going thru this, but I agree your attitude is the bestmedicine ever. Being in a calm, healing state of mind, plus the power prayers, and of course modern medicine, is the perfect 1,2,3 punch to kick cancer. Thinking of you and please enjoy your camping!

Arlene, I hope chemo today goes smoothly. It is very do-able I found,hope you do too!

SA8PG

Lucy

Sending prayers your way. Keep the faith my pink sister. This is just another part of your story (your testimony of faith). Keep that bright light shining. I have never met you but just from what you have written and share you inspire me and others to keep pressing towards the mark. Thank you for that!!!! God bless you. ))

Arlene

Prayers as well for you on treatment day. Rest.... Please update us when you can. You can check the box for treatment one being done. Yippie!!!!

Have a great weekend everyone. I'm gonna take my 8 little ones to six flags. Lol. Yes I'm crazy lol. Making memories.....

Hugs

eileenpg

Lucy= I wish you the best. My thoughts are with you, Enjoy your weekend off!!!

Tobycc

Lucy you are one amazing warrior. thank you for being you, and for sharing you with us. You will get through this with HIM, and your loved ones

Kath

candi07

Lucy, you are in my prayers.

greenae

Lucy, you are in my prayers. Enjoy your camping trip, and you can get all over this LN when you return. Keep the faith!

My infusion went well! HGB back up to 10.8 after the hemorrhage, so I was good to go. Just took forever! All the pre-meds...but if they are minimizing the SE's, I will sit in that recliner without complaining. Had RD, and SW see me. who then sent in the shrink. So, while I am Miss Chatty in overdrive because I have never taken decadron, and am now on it for 2 days...Shrink decides I should be on Prozac or Zoloft or Klonopin...to help with my anxiety. I kinda feel it was an unfair eval of me. I mean during my first chemo? On Decadron...he's lucky I wasn't shopping online while he was talking to me. LOL. So does anyone have some thoughts on these meds? I am not thrilled with any of them, don't like the SE's. But maybe one of them can calm me down...I tend to cry more, feel anxious before each new experience...but I believe my feelings are justified...this BC sucks, at times! Anyway, Maybe I'll give Prozac a try?

sending warm thoughts to all, thank you for thinking of me,

Love,arlene

eileenpg

greenae= I have always been on high speed. Decadron put me into overdrive.The day of chemo I was flying with so much energy. Don't know if that would be the best day to evaluate me. One of my close friends told me they thought chemo would slow me down and make me act like everyone else in the world. My MO gave me a script for lorazepam 1 mg for anxiety and sleep. I took it at bedtime a few times. Curious thought does everyone see a psychiatrist where you are going for treatment? Best of luck. Oh, I shopped on line all night during chemo when I could not sleep. Now own the same shoes in 7 colors.

Luvmydobies

Arlene, I had to be put on Remeron and Klonopin in the middle of treatment because my anxiety increased a lot after my third bout of C Diff. It was nice at the time because it helped me calm down but I have to admit it was extremely hard coming off of the meds, especially the Klonopin. Klonopin, Ativan, Valuum, and Xanax are all Benzodiazepine's. They can be addictive but are very helpful at small doses under a doctor's supervision. Although my psychiatrist tapered me off of Klonopin slowly I still had withdrawals but I had to keep getting higher doses because the small dose became ineffective, so I think that's the main reason I had such a hard time. I was like a zombie at the higher dose so I wanted off of it. BUT, with all this said, you have to do what you and your doc think is best. I did use Ativan at night to help me sleep and it was easy to come off of that so you may give that a try. I've tried some antidepressants and haven't had good experiences due to side effects. I'm apparently one of the few who gets the weird side effects. Glad the first treatment is done!!!

Allydp

Lucy - I'm so sorry you're going through this. I agree with others that your amazing attitude will carry you through. Sending you lots of prayers and you decide on a treatment plan.

greenae

Thanks, Ladies for your help and ideas. I think I am leaning toward trying the Prozac, but I need a few Xanax for MRIs, and assorted other tests I despise, and the Ativan for instant calm and sleep. I will see what he thinks. I am a little afraid of the klonopin, and the extra SEs from all of them!

Eileen, I'll bet ypour shoes are nice! I love shoes!

Ally, That CDiff must have been awful, and I. too hate the zombie feeling. Prozac shdn't do that, I hope. Waiting for a call back from my ONCO NP, to discuss before I call shrink back. Have a headache and just took more decadron, Zofran and Colace...Neulasta injection at 6p...blaaah.

Thank you, Ladies!

arlene

anotherNYCGirl

Arlene,- I took all the anti-nausea meds after the first chemo, and yes, - had headache from them. Did you get Emend? That is the best, and I relied on that almost entirely after the first chemo. ( I did take whatever they gave me at the infusion, - decadron i think, but once home I avoided those meds. ) I also found Ativan to be terrific for my nerves, and for sleep, and even as an anti-nausea. Even 1/2 pill helped during the day.

If you are going for neulasta, - TAKE CLARITIN!! (one 24 hour, 10 mg) It helped me TREMENDOUSLY.

Lucy, - I hope your camping weekend is relaxing and wonderful!

Shari, and all here, - I send hugs and as always, BE WELL wishes!

greenae

Thx, anotha, I drank some coffee, headache a bit better. Plan to drink 80 oz of water a day and 20-30 min on bike. At infusion the y gave me decadron, 20mg, Pepcid, emend and benadyrl, the TC. Had to take decadron and Zofran this am. I sspoke with my MO...the heck with the Prozac for now. I seemed nutz yesterday because I was exhausted and getting first chemo! so happy Mo felt same...love her. I like the Ativan prn best.

Thx for your help!

love, arlene

KJSUN

SpiritBlessing, I was born and raised in the Seattle area and wish I were there now! Visit Pike Place Market for me. I know you must be in good hands with all the facilities and research centers in the area. I am sorry the trial you were on didn't work out. My cousin and another relative by marriage have been treated out there and had very positive outcomes. We are a bit more limited here in South Florida, but I drive 3 hours to H. Lee Moffitt Cancer Center and Research Institute. I had my first surgery there in 2014 and everything went well. I never expected to have to do this again, but here I go. I have my DMX April 6th. Getting really nervous and to be honest, scared. My first breast cancer was estrogen receptive and I didn't feel bad, I just found the lymph nodes in the shower. This is much different. I haven't felt well for months and am not as strong as I was before. I am starting to fall and just getting weaker. I don't know if that is common. I hope whatever chemo they decide on is something I can tolerate well. Sorry to just jump in like this, I guess I am getting anxious for my surgery and not getting much sleep. I was glad to see you were going camping for the weekend, being outdoors in the Pacific NW always felt like it was healing to my soul. I wish you the best for the next course of treatment they start you on.

Katherine

eileenpg

KJSUN= Hugs and wishing you the best on April 6th. Sorry you had to do a repeat preformance of BC. UGH!!

Luvmydobies

KJ, so sorry you are here but don't apologize for being here! We welcome everyone like a big family. It sucks to be part of this but we are here for each other. So we will be here for you too! I pray every day for this "family". XOXOXO!!!

Cocker_Spaniel

Lucy so sorry to hear about the node but glad you are going camping to take your mind off things for a while. Sending heaps of prayers and warm hugs to you. 

Eileen I never saw a psychiatrist and wouldn't have wanted to. Just  knew this was something I had to go through to get that fecken cancer out of my body and the quicker the better.  I felt so much better after my operation that at least it wasn't there anymore but the thought of chemo scared the living daylights out of me.  Then again looking back it went so quickly and rads even more so. 

Katherine you needed to jump in here and you are very welcome.  This site is nothing but support, concern, love and prayers all mixed in together.  I do think you need to see your oncologist urgently though regarding the "starting to fall" and "weakness" and the fact you haven't felt well for a long time. Sending big hugs and praying that he can put your mind at rest.

Shellbeach7 welcome to you as well.  You are just as beautiful and brave as anyone else on here.  It's a great place for support and love.  Hopefully your generic testing will come back ok and your surgery goes well.  Will be thinking of you and sending warm hugs.

Shari nothing like a good nights sleep to help you cope better.  Cancer sux and always will.   

SpiritBlessing

Hi ladies,

Cocker I was wondering what treatment you have had for your stage? The fact you were dx back in 2011 is promising.

KJ welcome and sorry you're here but I know that God led me to these boards and it has been one of the best things for me. Yes I am pleased to be at SCCA for my treatment. It is a bit of a drive but so worth it. Also, my treatment did work for a long time but with this type of cancer it is hard. I am concerned you are falling and not feeling strong. Might be good idea to talk with MO about this. Have you had treatment already before your surgery? If so what drugs? How did you find out this time around? I find it interesting when I hear of second rounds being a different type. Do you mind me asking how old you were the first time and now? Will be praying.

Thank you all who posted encouragement and support. It sure is a blessing to have this board for us.

Camping is great but tonight a storm is sweeping through but supposed to be better in the late morning. It has been nice to just chill. My onc nurse called me today to let me know my insurance covers the pill Xeloda 100% and don't even need to pay copay...thank you JESUS! Well good night warriors...keep up the fight...Lucy.

Cocker_Spaniel

Lucy my treatment was the same as most.  I had left breast cancer with no lump. It was found on my two yearly mammo as microcalcifications.   Because the calcifications were quite well spread I was advised to have a mastectomy however, in hindsight I wish I had, had a bilateral.  My prosthesis is very well made and fits well but I don't like being one sided.  I had my surgery with no complications whatsoever but it was found in four nodes with encapsulation (coming out of one node) so my surgeon took them all just to be safe.  All my scans, MRI's and echo's tested as normal.  I didn't really have any pain just a little bit of soreness so I asked if I could go home the next day.  He wasn't very keen on this and said no not yet but I couldn't see the point in taking up a bed when somebody else could have it.  So I got dressed and slipped out while he was doing his ward round. Things went well and apart from the tug of the two drains I felt and looked well.  They were in a little bag on the floor but I kept forgetting they were there and would get up from my chair and walk away, that was a bit sore.   Then came the chemo which was AC with the usual red devil every three weeks.  They gave me amend which was wonderful and apart from constipation and some flu-like symptoms for a few days, I had no other issues.   I'm not a big eater but the Dexamethazone they gave me made me ravenous and I would eat eggs, bacon, hash browns and tomatoes in the middle of the night.  Then I would go do some work as the Dexa kept me awake all night. Then it was time for Taxol and that was a different matter.  I reacted to the first infusion of this after just 30 seconds so I had to have a  break for ½ hour and they gave me a Diazepam and tried again and all went well. I only got to 7 out of 12 of the taxol because of neuropathy in my fingers and a terrible itchy rash on my hands and could hardly move them.  I transferred my work to my home and was able to continue on working full time, I just worked in the mornings, had a nap in the afternoons and then worked in the evenings. I washed my hands more than usual although I do that a lot anyway but when I went into the surgery I didn't bother with a mask because you can get the usual round of germs just poking your head out the front door or at the supermarket.  I had and still have great faith in my surgeon who gave me an excellent margin and I had NZ's top oncologist and top radiologist, both were excellent ladies and I received excellent care.  I see my surgeon every three months and my oncologist and radiologists every six months, due to soon seeing them yearly.  I have complete faith in God and believe He has a plan for all of us.  I also have a wonderful family and friends  that were wonderful to me and I couldn't have gone through this without them.  

I also underwent genetic testing but the results came back inconclusive so hopefully this will not affect my daughter or granddaughter in the future.        

simplelife4real

Lucy, I'm sorry to hear about this latest development for you. I hope that whatever your MO and you decide to do next helps halt the cancer's growth. That's great you are going to go camping. It will create some wonderful memories and, hopefully, take your mind off TNBC for a bit. Enjoy your time camping!

It seems like they are learning something new about TNBC all the time. Here's an interesting article I just read that divides TNBC into two catagories. Two distinct types of TNBC

eileenpg

Simple=Interesting article. Thanks. Hope you are doing well.

Melissa86

Ally- Hi I am new to this site and thread but I saw you mentioned you had your genetic testing done through blood. When they did mine I had to spit in a cup and they sent that off to a lab. Do you know if that makes any difference. My testing came back negative which kind of shocked me given the family history on my dads side. I know they were also looking for a mutation called PALB2 which also came back negative.

eileenpg

Melissa:Welcome,sorry you are  here but, a great place to be if you have to join. I had blood drawn for my genetic testing. I was counsled over the phone and got my results back 5 weeks later. My insurance paid for the cost ($9000.00). I had a 20% chance of being positive due to family history,TCNB, and ethnic group. They stated they would call me back for another blood draw for the test that links panceatic cancer to breast. She stated that test was just being approved for testing. She did not know when that woud be . I think it was PALB2.

slv58

Melisa just want to welcome you, this is a great place to be for support, information or to vent- all these ladies are so understanding and you will quickly feel like part of our family!

When I had genetic testing done it was also by blood test.

Shari

jarris77

When I had my genetic testing done, I had a choice whether to do blood draw or use saliva.

ninjamary

My genetic testing was done via blood because of the high risk of different types of cancers in the family. A friend of mine just did the saliva test also. I came back negative on all cancers tested. Big Yea!