Calling all TNs

Cocker_Spaniel

Oh Bak your post made me so teary on what you have been through and are going through.  You have always seemed so strong to me in all that you cope with whereas I have always felt so weak up against you.  I have always tried to use humour to hide my feelings but it doesn't always work and most days I am so very scared.Then I read what you have gone through and it makes realize how selfish I am when there are people like you  in the world. I feel sure you will find your energy again and will be able to go back to work,  just try not to rush things because everybody heals at a different pace and I know you will get there.  I would love to give up my work as it makes me so depressed but I can't afford to just now so its a case of keep on trucking. Something good will come up for you I know it. Sending you and all the other brave ladies on here  a great big warm hug.

Tazzy I almost didn't recognise  you.  Your hair is gorgeous.  Good to see you posting on here again.  I don't care for the facebook site much because everything comes up on my home page and I don't feel its very private but good to know you are doing and looking great. 

bak94

Jen-I had pain all through chemo too and I had many scans that nothing showed up. I still have lasting pain and think it was caused by the chemo but doctors say no. I don’t agree. I hope you get a scan to put your mind at ease.

Karen-That would be scary to take chemo without anybody there. I hope you are feeling ok.

Stupidboob-Your description brings back vivid memories! I am so sorry you are feeling crappy, I hope you find some relief.

Cocker-Now you made me cryJ You are NOT weak, and I certainly do not feel strong. I feel like I am about to have another meltdown! My hubby told me tonight that I am useless to him! Funny, but that is exactly how I feel, not only useless to him, but to him and for everyone.

I also found out today that I am pre diabetic, and I have been on metformin for cancer prevention, thought that is supposed to help with diabetes? One test that shows inflammation, forget what it is called, is elevated and I think that is bad for cancer. I tweaked my hip and now freaking out about that, I can barely walk right now. The rest of my blood tests were good. I will have tumor markers done next month when I see my MO. Oh, and both my primary doc and MO are leaving. I like them both and don’t want to find new docs!

The good news is my 2 mmj plants that I am growing legally are doing great! Can’t wait to make cookies and tea out of themJ It seems to be the only thing that helps me sleep and takes away the muscle/joint pain. I am going to buy a couple more plants this weekend! I guess I am allowed to grow up to 15 plants!

Again, so sorry to be so whiny! With all my crap and everything else that is going on in the world I am just feeling a bit down. I know I should be happy and thankful, but I am just not there today.

5thSib

Stupidboob that is a rollercoster of SE's. How often will you have treatments? Sending up more prayers for you.

5thSib

Ive debated on sharing this article but we have several ladies with recurrances right now so I'm going to. There is hopeful news about testing of a targeted therapy but some disturbing news about Taxol -- and I just finished 12 weeks of that. I'm taking the article with me to my MO visit today. It is specific to TN.



http://news.vanderbilt.edu/2013/03/breast-cancer-study-explores-therapy-to-slow-recurrence/

schatzi14

5thSib...thanks for the info..it is indeed disturbing to say the least when we were led to believe this was the best chance for us. Please let us know what your MO had to say about it! I also had 12 weekly taxols.

Anonymous

Sib, thank you! I will take it with me to my appt on Monday.



Phyllis

schatzi14

I should also say I am basically TN regardless of my profile saying ER+...it is miniscule.

lmcclure4477

I am triple negative and got dose dense AC and now dose dense taxol. This is disturbing to read. I just saw my MO on Monday and don't have another appointment until may 3rd which is halfway through my taxol treatment. I thought it would kill the beast.

luvBngGma

I don't post often, but have taken great comfort in the posts of everyone. Today is the 1st anniversary of my lumpectomy. I continue to see my MO e/3 mos. Finally had my port removed last week. Tumor markers remain in the normal range. That's the only thing she does for f/u. And even then, she cautioned that they are not very reliable. 3 weeks away from my 1st mammo. Anyone else having trouble deciding if the new 'feel' of your radiated breast is 'normal'.  I still have a seroma, and what I would consider masses, not lumps. suspect it is lymphedema, since i notice it more at the end of the day.  MO has examined it numerous times, and assures me its a 'normal' feel for surgical/radiation. Hard for me to feel comfortable with the changed breast.

Wish I could post pics of my hair (dont have an online photo storage). Finally had enough of the gray, and put a non-ammonia color. (same as I used pre-C). Still has a crazy  texture, and looks like a birds' nest most of the time. have had one trim, maybe time for a second to give it some more shape. Last time I saw my 4yr old GS, he said, 'Gramma, your hair is getting too long, you need to get a haircut!' It may be all of 2" long! How quickly they adapt to a 'hairless' Gramma look as being normal. :-)

We are looking at changing roles at our house, me from being 'cared for' to taking care. DH looks like he's going to need rotater cuff surgery. He's weighing his options: missing out on prime camping season for the second year (last year was devoted mostly to chemo/surgery),or relying on pain killers. Or bite the bullet, and be incapacitated for several months.  Am relating to how helpless he felt for the past year, and never complained.

{{hugs}}to all of you who are looking new DX and treatment. Hoping for alll of you, gentle and effective treatments. What a strong group of women we have become, and compassionate, sharing the sorrows, as well as the joys.

teresa008

Thank you so much! I am supposed to start paclitaxel in four weeks and I won't see my regular ro at my last appt. before I'm supposed to start it, so I just emailed her the article and asked her to read it and get back to me. I really appreciate your taking the time to post these articles. I can't sit at my computer for very long these days. I just start pouring sweat if I sit here too long (over 15 minutes!) so I can't seem to get any research done for these kinds of things.

jenjenl

is paclitaxel taxol?

teresa008

Paclitaxel was the one discussed in the article and that's what I'm supposed to start in a few weeks. I don't know that taxol is the same one.

Anonymous

paclitaxel is Taxol. I found my info sheet.



Phyllis

bak94

I think that is why in some studies and protocals they are starting with taxol and then doing ac, to mop up any of those cells. I just have to say my first time around I did ac followed by taxol and did not have a recurrence, my recent cancer was definately a new primary. So even though it is disturbing, ac followed by taxol has been beneficial to many. But for those still in treatment it is a great thing to check out, could even better your odds! This last time I had Avastin with abraxane (basically taxol) I wonder if that helped with the stem cells. There is so much controversy surrounding Avastin, but my doctor really pushed for me to have it. I am hoping I did not have much cancer left after the ac, so maybe the abraxane didn't leave any of the cancer like stem cells. One can hope, right?

My hip is hurting so bad it is unbearable. It is scaring me, but more so I just want this pain gone. If it is not better Monday off to the doctor I will go. I have had problems in the past, so I am hoping it is just that. I walk on uneven ground and I think that is what messed it up, I stumbled a few times.

Luvbng-We went through the same thing! My hubby has had rotator cuff surgery twice! Once before my first diagnoses and once after my first diagnoses. Sorry you have to go through that! My husband was in alot of pain and had to take alot of pt to get his strength back. He is much better now years later.

anne11595

Hello to everyone. Like a lot of lady's I've been ready this blog since I was told that I am triple negative also.I will be starting chemo next week.But I have a question,Im doing the clinical trial NSABP B47.Has anyone else heard or are in this trail. I Guess I fall in the High-Risk Node-Negative Her2-Low -Invasive BC. It hads 10 more months of herceptin (1 a month).I have a health heart but I've read that it does a number on some peoples heart. But I will try any thing not to have this come back like it has to some . Wish I am so sorry about!

Luah

Re the TN study on taxol, I went back to the original research. First, I don't think you can draw conclusions that taxol, per se, is detrimental as a systemic treatment by this study's finding that it may let slower-growing cancer stem cells by. You still have to kill the fast-growing ones, and there are many studies showing that taxol is very good at that. Second, while these researchers chose to focus on taxol, it could be that these findings apply to other chemo drugs too, we don't know. Third, there is reference to basal cell sub-type, and we know that not all TNs are that. In fact, a lot of researchers have found that TN has multiple sub-types. I guess my point is, that we should look on this is an incremental andpositive step in the exploration of TN... I hope it leads to clinical trials for TGF-b inhibitors alongside chemo treatments. I would be interested in hearing what your MOs say about it. Keep us posted.    

5thSib

I took the article with me to my MO appointment today. He said he had already seen it and in fact knew the researcher. He said that even if he had known the results of the study before he prescribed my treatment that he would still do the Taxol because that is the best they have right now for treating TN and will be used until something better is found. He said that the study looked promising as far as finding the TGF-b inhibitor, but it has only been tested in mice and has not been tested in humans. He said if it does at some point get approved for use that he will make sure I get it. He said that TN is not the only cancer that can have cells that sit dormat until a later time and they don't really know what to do about them either. He did tell me the first visit that I had with him that they really don't know how to treat TN but that the treatment he was prescribing was the standard treatment for now. As Luah says, we can be thankful that so much research is being done in this area and hopefully this study will help us down the road.

He gave me Lyrica to take for my neuropathy today -- just a small dose to take at night. He said to try it for a couple of weeks. I asked when my port would come out and he said in about a year if PET scan was all clear at that time. He also told me not to color or perm my hair until he said it was ok. He didn't say how long that would be though. He said it could cause it to come back out. So maybe I'll be used to the white by that time and just leave it alone. I don't have to go back to see him for 6 weeks.

schatzi14

Luah...again, you are the voice of reason.

5thSib...I have the feeling if I asked my MO about this latest study, his answer would be the same as your MO's.

Until they find something different, we need to use whatever they have.

I also decided to just keep my grey hair and deal with it. It's been 14 months now and it continues to come back in darker... at my age (69) it was already starting to come in grey...so what the heck! No more colouring for me. One less chemical!

JAN69

NavyMom - I think I saw you ask how to reduce cholesteral recently.  I was just reading a brief little blurb from a blog-friend.  She was saying how great beets are for cholesteral.  I haven't checked this out independently, but I thought you might be interested.  How are you?  Were you able to make any turtles?  I've got 50 lap quilts in some stage of completion.  About 20 are ready to be delivered, but I want to finish them all before summer.

I've had some medical issues for the last several months.  We thought the medication I was prescribed in Feb. to treat some severe headaches was what was making me sick.  Turns out I had meningitis.  I'm just getting over that (along with lumbar pucture,etc.) and now they have found I have a huge nodule in my thyroid.  I have a biopsy this afternoon. 

Wishing all a beautiful spring day.  Wishing Boston a quick resolution and recovery.  Jan

PeggySull

Hi, I've just had some disconcerting news about the pathology results from my surgery. Very confusing.



Does anyone know who are the top experts on TNBC in the US so I might send my path reports to them and arrange to pay for a conference call.



I live I the Washington DC area, but location is not a problem.



Thanks for any help you might provide. I'm kinda falling apart here emotionally so I'll leave it at that for now.



Peggy

NavyMom

Hello Jan, I have not made any turtles yet.  Had cataract surgery both eyes.  Just got cleared to get new glasses and due to pick them up on Wednesday. Very hard to sew when you can't see well. YAY. 

I do like lots of veggies...But beets taste like dirt to me.  I spoke with my MO about the cholesterol issue.  She recommended red rice yeast supplement  Said she takes it herself for cholesterol reasons.  Told me her level dropped 50 pts so far.  So I am giving it a try.

natL12

Dear Jan69 - good luck with the thyroid biopsy.  You'll let us know the results when you get them, I hope.

JAN69

NavyMom - Beets taste like dirt?  Wow!  I love beets, especially pickled.  I hope your eyes allow you to get back to doing some fun stuff.  I think of you and your son often.  Good luck with the red rice.  Hope it works for you.

Nail 12 -Thanks for your concern.  I have to wait until late next week for results and will share the outcome.  It turns out that it isn't my thyroid, but parathyroid possibly.  Doctor couldn't tell--nodule is very deep.  Oh my!

Peggy - Holding your hand while you wait for some suggestions.

OBXK

Peggy -

http://www.wellness.com/dir/2396288/oncologist/nc/chapel-hill/lisa-carey-hemotalogy--oncology-clinic-md



Dr. Lisa Carey - Chapel Hill

PeggySull

Thank you OBXK, I will certainly look into Dr. Lisa Carey.

Jan 69, I appreciate your  support as well.   If it weren't for these boards I think I would have gone stark-raving mad during this whole process.

Peggy

Anonymous

OBXK, how are you feeling? Did the reaction in your hands resolve itself? What is your Xeloda schedule?



I live alone so my son (he's 30) is flying in tomorrow to stay with me for the first week. Monday early I have the port placement surgery. They will leave it accessed and I will go for labs, see my MO, then have the Xeloda by mouth and the Ixempra by IV. I also get benedryl, famotidine and dexamethasone along with the Ixempra.



I was feeling pretty tense about it all yesterday, even after a walk in the sunshine and lunch with friends so I took a lorazepam. It was a miracle....or drugs, but I felt a LOT better.

Anonymous

Navymom - beets DO taste like dirt. Sometimes, anyway. But mostly I love them. They are so beautiful.

Cocker_Spaniel

Good morning ladies.

Bak - you are not whiny at all.  You have been on the biggest roller coater of your life and have come through so much.  It is natural to get down as we all seem to be at the moment but you will bounce back.  Re your hubbys comments, perhaps he is feeling a bit low as well.  Do you remember when you left work, for good, and just walked out, he was there ready to give you a hug.  Mine would have said "you will go back tomorrow and  say you didn't mean it, wont you" lol. (He would obviously be thinking of my wages again lol). I hope he is now giving you the emotional support that you need and you can be there for each other.  Sometimes we have to force ourselves to be happy and thankful when we aren't and I think only the ladies on here will understand that. My dear old fella is convinced I am cured and won't have it any other way even though I say, what if,  so I hope to God is he right.

By the way what is mmj plants. Is that marijuana? If it is, it's not legal in NZ which is unfortunate if you say it helps. I could do with some of those cookies.

Mcclure - I had AC and then Paxitaxol (Taxol for short).  It seems to be a standard treatment here.   Yes it is disturbing to hear those things about it so that is why I don't follow google or read all the blogs or I think I would go mad.  I'm just hoping that what they gave me works.

Jan - my dear girl you have been through the wringer.  Meningitis and now a parathyroid nodule.  I hope everything turns out to be ok for you. From what I type at work, thyroid problems seem to be related to cancer for some reason.

Navymom - I think I might keep away from beets if they taste like dirt. Thing is how do you know what dirt tastes like lol 

Re hair.  Mine came in grey with silver tips and it looks determined to stay that way.  I surely won't be colouring it if it can bring back the cancer and at 66 I don't really mind so I'll just put up with it.    

Ladies just twist your lovely lips into a smile even though you may not feel like it and you never know it may work.  Thinking of you all and sending big hugs.     

Cocker_Spaniel

I thank God every day for helping me find all you wonderful ladies.

jenjenl

Today I went for a walk with the kids and for the first time in a long time it felt good.  Now if I could only figure out what I am going to cook these wild children for dinner   Tomorrow I can eat a HUGE breakfast and then nothing for the rest of the day until after my hysterectomy on Monday @ 11.  I think it's odd they have that long of a food restriction.  It's going to suck since my DH is a chef and Sunday is his only day off.  Oh well...what can you do?!?!