Calling all TNs

Lovelyface: Tumour markers are notoriously unpredictable and unreliable, which is why many oncs (all at my cancer center that I know of) don't use them unless they are following advanced disease progression. Please don't let them work you into a frenzy, especially as you are still well within the normal range!  

Luah:  I am so happy to hear that Tumor Markers are used for advanced disease progression.  I am relaxed and happy today after reading all your comments.  I am putting together my list of questions today for the Onc. tomorrow and believe me, revisiting cancer issues is no fun.  I hate it.

Christina1961 - I just wanted to suggest to you and others who wants to try this - to massage your breasts and entire rib areas with coconut oil each night as you prepare for bed.  I have found this therapy to be the best thing ever.  I used to have a lot of very sharp pain underneath my breasts and there used to be lumps I used to feel.  I asked quite a few doctors what they were, they said they didn't know.  By massaging they continue to go away.  Every once in a while they come but with massage they do go away.  In my opinion, I feel they are some sort of liquid which collects in the lymph nodes.  Either the liquid formation is from having chemo or maybe from menopause, both of which happened to me at around the same time.

Get pure coconut oil from an East Indian store, they have the best.  Costco has it too, however, I am not sure why their's don't have any smell, which means that it is probably processed.  I was born and raised in Fiji Islands, and I have first hand knowledge about coconuts, which is the most pure oil ever.  Everything about a coconut is pure, the water inside the shell, the oil, the milk.  Coconut oil when rubbed on the scalp gives you healthy lushes hair, so for those of you who want their hair back really fast after chemo, use coconut oil, massage the scalp, and wash it the next morning.

By massaging your rib and breasts, one can also get really familiar with their bodies, lumps, surgical scars, etc.  This works great for me.

Hope everyone has a great day.  It is raining here today in the Bay Area, California.

Thanks for the tip, Lovelyface!  I will look for the coconut oil - if the non-Costco oil smells like coconuts, I would prefer that over a coconut oil without scent.  I see my MO tomorrow, too. 

I have been away from this board about a week and jsut catching up

Beccad-I am so sorry about your news.Hang on and make a plan, you can do this!

OBXK- so glad your scan came back clean. What a reason to celebrate

Lovelyface..my numbers are inthe 20's and my onc says they are normal..makes me freak out but I can't control things there.

Laura....know you are such an amazing woman and I get so angry at this #%%$$# cancer. I hope you know we are all here for you for always.

Suze hi there if you are lurking.

Good morning ladies. Just thought I'd check in and say hi.



MBJ- thank you for your message. Have you considered getting another opinion. How on earth can they give you an time estimate on living when there are so many chemos out there that you haven't even tried? I just don't get it.

Ive got a lot on my mind. I realize that with me they can't even give me an accurate estimate because my cancer is moving so fast. The pain is increasing by the day. I am meeting with hospice today at 1:00. I just pray I can be here for my sons graduation. I have a birthday coming up next Saturday, I'll be 49yrs old. Hard to believe. I'm stuffing myself with herbs and meditating. I need to get some things in order. I'm going to talk to some friends about funeral arrangements. I guess I'll see if I can prepay for my creation. All really boring stuff but I want my kids to have to deal with as little as possible. I'm sure my friends will help.



The best thing that happened to me yesterday. I received a phone call from one of my contractors yesterday morning. He had called the day before to see how I was doing. I told him the news. Yesterday he called and said " Laura Jane, what are you doing next Monday?" I told him "nothing really I would be at home". He said " Good! I'm bringing my crew over to build that deck you've always wanted, so when your too weak to go down the stairs to your gardens you'll still be able to enjoy them". I burst into tears and told him "thank you, but I just don't have the money and I doubt I'll be able to work this spring", he said," it's not going to cost you anything, I just want you to be able to enjoy looking out at all you've done and see your plants and those fish you love". I told him in-between tears how happy that made me and I didn't know how to say thank you for such a wonderful gift. He said my thank you was enough. You guys, I just can't believe it. I've wanted a deck for so long but I've been dreaming about it for the last week and really regretting not having had one put in while I was working. There always seemed to be something more important. When I was feeling good I never really thought about when I wouldn't have the energy to walk down the stairs, other than many times when I was doing chemo I thought about it. But I always thought I'd beat this FC too. I'm still in shock. He's always been so sweet but it's always been business and let me tell you, we have often conflicted over pricing. I contract him for things my crew doesn't do like masonry, concrete and decks etc... What a genuinely nice, big hearted man. So nice to share something happy with all of you.

LJ- What an awesome gift from the contractor! I admire that you are taking matters into your own hands and dealing with all the "boring" stuff so your kids won't have to. I wish you were not in so much pain. I hope you have some good days and are able to enjoy your birthday next Sat.!! You are in my thoughts daily and wish you a happy day!

My Onco. said that he had not even noticed my rise in CA27-29 since it is not out of range (mine is 17, over 34 is out of range).  Then he said something which I was not able to grasp - but that my biopsy might have impacted the test and that's what made it rise a bit. I was not able to ask him to explain this to me. I will try to research on the internet.  Regarding my neck pain, he is a little concerned, but asked me to see my primary care doctor for pain managment and see if it goes away.  If not I see him in 3 months when he will do some imaging, or I can see him sooner if I feel like it is a concern.  Overall, it was a pleasant visit with him and I am now relieved over the tumor marker test, however, can't wait for one more test to show that it has gone down.

LJ that is just awesome you are getting a deck!  How nice of him.  You are such an inspiration to all, and how great of you to think ahead for your kids.  I think all adults should do this no matter what the situation.

MBJ  so sorry for what you are going through.  I really hope they decide to try another chemo!  Never give up! 

LJ, What a great gift!  It's funny how some of the people we never expect to help or even call are the ones who come through with something wonderful like that.  I had a friend, but not a close friend, a contractor also - who called me every two to three weeks during my initial chemo.  It really touched me.  I hope you really enjoy the deck - do you have koi?  I think they are gorgeous. I have a big hole in my yard and a concrete fountain with faces that has been waiting for a few years now to become a pond with fountain.

MBJ, You never have to respond but hopefully knowing we all care and want you to get better will help you feel better and not as lonely.  During my days in bed during this, it always particularly helped me to connect here. 

Lovelyface, I bought some coconut oil - it is Tree of Life organic refined coconut oil.  No smell, really, but it really moisturizes - even better than the grapeseed oil I've been using. 

Laurajane....sweet dreams to you my dear.  

MBJ.....so happy to hear you are being treated well.  i always loved PT as it gave me that extra boost of adrenaline that always made me feel better.  i hope it gives you that extra boost as well.

Laura,

I hope your symptoms are just stress and medication. I got some ocular migraines during the eribulin with weird zig zaggy patterns. I had had them before years ago so I knew what it was but the chemo seemed to possibly set them off again.  Over two weeks out from chemo now and haven't had them again.

LJ - Just read the posts on the deck and am so happy for you.  I am totally convinced that angels do exist and come to us in the form of very dear special people that make our lives brighter.  I am hoping that all of your head problems are merely stress, as you certainly have an abundance of that to deal with on top of everything else you are dealing with.  I know it must sound trite to you by now with all of us constantly reminding you, but once again, you are a truly totally amazing and awesome woman.

MBJ - Keep on keeping on - I will not stop hoping for positive news for you.

All good wishes to everyone on this forum,

Linda

How are you Bak?

Hi all, I am an old timer on BCO not TN..but my friend is and has mets...

anyone have a recommendation a good onc for triple negative in LA or

southern california...would really appreciate you help

SoCal:

Go on over to TNBCfoundation.org and send a message to "Steve" asking for assistance with a doctor in that area.  He will reply with much info.  He is a patient advocate for us triple neg's and also lives in California, so this will be a real easy one for him.  Also can help in getting your friend seen like yesterday.  Good luck.

Linda