Calling all TNs

LRM216

CharB:  Just make sure Annie checks with her onc before taking anything with herbs in it. 

My onc was seriously against any herbs at all while undergoing treatment with chemo. 

mccrimmon324

Laura, While I'm sorry your scan showed progression I was glad to know that the Havalen is working for you.  I bet if you had a scan prior to re-starting this last batch you would see a definite improvement.  I'm sorry to hear your in pain, I'm praying that you hit your 6 week mark and Havalen keeps on giving! 

I actually quit smoking prior to being diagnosed.  What a slap in the face it was to be told I had cancer anyway!!  My onc pretty much told me the same thing about it not making a difference with BC, however it's lowering my chance of Lung cancer.  Oh well. 

OBXK

Heather - thanks for the article. When I went to my MO, I had been given a dx of IBC. I didn't even register the TN, since my aunt had died of IBC and I knew how aggressive it is. He looked at my breast and said this isn't IBC. I said Yay!Yah! He said no Yah! - TN is very aggressive. I thought the guy was going to start crying. He hugged me as I left and said - This shouldn't have happened to you, I am so sorry. I had been in remission for 7 years.

bak94

Not sure if the story of Josh Powell is national, but I am devastated by this murder suicide. I do not know them, but the story is so tragic. First his wife was missing, been about 2 years. He was a suspect, but not enough evidence. Well, he took his 2 sons, got into his house on a supervised visit, locked out the social worker, took a hatched and injured his 2 sons, I think they are 5 and 7 and then blew the house up. All 3 died. The boys were so full of life and just beautiful children (aren't they all though!). I can not imagine what the family of Susan Powell, the missing wife, is going through. I think her parents were trying to get full custody of the children, or maybe they already had it, I'm not sure. It is just so wrong that this happened. Here are people fighting for their lives to be there for their children and this madman has these beautiful children and all are healthy and he ends it for all of them. I just can't stop thinking about this.

ksmatthews

Heather thank you for the article. Loved it!

Laura I quit smoking a year before I was dx,  cause I lost my bf to bone cancer and said I was quitting cause I didn't want cancer.     oh  well,

I have just recently started back and hate myself for it.  I am one though when I am ready to quit I can put it down no problem.  So I'm sure this is just a fad for me..

beckyv

Can anyone tell me how long after your last treatment you started feeling like yourself again.  My treatment is 4 AC (every two weeks) followed by 4 T (every two weeks).  I just completed my first round and felt OK - not too many SEs.  Do the four rounds of T have more SEs?  If all goes on schedule for me - my last round will be May 8.  My wonderful bosses are offering my husband and I a cruise - it leaves on June 15.   Will I be feeling well enough to enjoy this cruise?  I know everyone is different - just trying to get an idea of what some of you have experienced that have already completed treatment.

Huskerkkc

Becky,

What a wonderful gift! By all means, you will feel well enough for a cruise, plus it really helps to have something like this too look forward to. I took a trip before my last chemo and other than being very tired, I managed just fine. Fatigue will probably be your biggest complaint. and no hair.

Lynn18

laurajane, thank you for the update.  I also miss MBJ and hope she gets to go home.  I am happy to hear your news about nothing showing up in high risk areas.  I hope that pattern continues and am glad the Havalen is working for you. 

bak94, that story has really bothered me also.  Someone should have been monitoring those boys when they were with their father,  he should have never been allowed to be alone with them.   Yes, in light of what we go through here, so many fighting to live,  to see a lives destroyed like this is very senseless.

beckyv, my dr told me 3 weeks, but I had the weekly taxol.  It might be a little longer for you since you have dose dense.  6 weeks sounds reasonable, I would think you would feel up to going. Perhaps you can plan relaxing activities, like days at the spa or laying out by pool.  Sounds wonderful!

gillyone

Lynn - the father was NOT allowed to be alone with the boys. A social worker was taking the boys for a supervised visit. The father shut her out. She called the cops, but the house was on fire and it was too late to save anyone by the time help arrived. The father had this all planned out.

riley702

Annie, you've received some good advice re: nausea and vomiting. I'll stress to take the meds faithfully whether you feel nauseated or not, as it's a lot easier to prevent than reverse. I'll also add the advice to drink, drink, drink (water!), esp. the days before, during, and after chemo. Drink until you slosh; until you're peeing every two or three hours. It will help reduce the side effects of the chemo.

I let myself get dehydrated when I first started chemo (I was also anemic), and once the vomiting kicked in, it wouldn't stop. I ended up in the hospital for 5 days getting blood and IV fluids. Got out just in time for my next round of chemo.

One more thing - the aggressiveness of TN means it sucks up the chemo and responds very well to chemo. Some ladies have no evidence of the original tumor after chemo, if they did the chemo before surgery. So chemo is our friend and try to think of it that way. I would visualize the tumor getting smaller and softer as chemo kicked its ass! That helped me.

Lovelyface

Ladies, I want to ask everyone a question which just boggles my mind.  Do you guys think that TN and/or any type of BC comes from within a person's body due to some bodily metabolic or other type of dysfunction or do you think this is something which comes from outside and attacks a body, just like a virus or bacteria.

My personal opinion is that there is something lurking in the environment which attacks a person who has an imbalance or a low immune. It attacks in the area of the body where there is an imbalance and that is where cancer forms.  Many women who are past 50, their periods are not happening anymore which used to protect them.  They have hormone imbalances (which is absolutely normal at 50), however, this evil cancer is so strong that it strikes the person and their reproductive organs, either the breasts or ovaries, uterus, etc. are affected just because of the fluctuating hormones.  For men, it is prostrate.

 My surgery is on Thursday, the 16th.  The procedures I had done recently, the MRI and Mammo/US has done quite some damage to my breasts.  They are burning, paining.  I am so worried that these tests itself may cause so much harm.  If not, why so much pain?  The pain is deep inside.

riley702

I think it comes from within. I think some people have a predisposition to having cells mutate (which could explain why cancers sometimes run in families), but it might be nudged along by exposure to environmental toxins, and that stress, etc. might prevent your body from dealing with these mutated cells, so that they grow and form a tumor big enough to be detected. My sister is older than me and has no evidence of BC, but then again, she had children, eats better than me, and lives in a much less toxic environment. She lives in the country and I've been in the big city for 30 years. I also smoked briefly (tobacco and pot) in my 20s and am a light drinker. She has never smoked or drank. So that might explain why I got it and she hasn't. Then again, maybe I got genes more prone to mutating than she did. I think a lot of it is a crapshoot.

bak94

I have heard that some cancers are believed to be caused by a virus or bacteria, but never heard that about bc being caused by those. I also think it is a combination of environment and our dna, and for some people strictly their dna. I read statistics on a study that said that all types of breast cancer, triple neg, triple pos, etc. have a simliar percentage of obese verses thin/normal at diagnoses. 69% are overweight/obese verses 31% thin or normal:( I am certainly overweight/obese. I know there are alot of thin women diagnosed with bc, but those stats certainly show it is better to weigh less!

Titan

The Josh Powell story did make national news...how awful....

Don't know the hows and whys of breast cancer but I think the chubby thing is blah...This is America...alot of us are chubby...

TifJ

I too believe it is all a crapshoot. My best friend has weighed between 300-400lbs most of her life. I have never been overweight (although I am pushing it!). She has never had a health issue.I too also believe that the environment affects your DNA. We could speculate all day what causes it, but there will always be someone who doesn't follow "the rules".

Laurajane- i am praying that the Halaven continues to work and gets you far and beyond that 6 week mark! Thanks for updating us on MBJ. I hope she is able to log on soon.

We had a similar story a few years ago here in KC to the Josh Powell case. The father took his kids on an unsupervised ( he was allowed) visit and they were never heard from again. He was arrested, but kept telling the police he had hid the kids with an out of state relative. Yeah, he hid them- in a field after he killed them. He finally admitted what he had done and that he wanted to mentally torture the kids' Mom as long as he could- this went on for years. Very tragic.

mccrimmon324

Sometimes the world is just a crazy crazy place.  How absolutely awful about those poor kids.  It breaks my heart. 

I too believe its probably all a combo of DNA, genes, environmental factors.  I am overweight.  Really trying hard to exercise and eat better.  I strongly believe that stress / grief and a combo of the above brought on my cancer.  We moved to florida 7 years ago, never really wanted to, my mom had moved down and my grandparents were here.  Mom passed away in '06 unexpectantly, and I was left to care for my aging grandparents, no other relatives to help.  I went into a very deep depression.  I think it just killed my immune system and started this crap!  Anyway, that's my theory and I'm sticking to it.   

On a funny note, that I think you ladies will appreciate.  I got a phone message from my MO's office at 7:30 this morning.  The message started like this...  Good Morning, this is Shay from Dr. Lobo's office, we need you to come in as soon as possible ....

After I picked my heart up off the floor and changed my pants, I listened to the rest of the message.  Turns out they needed some paperwork signed so they could get paid for the neulasta shots I was given way back in June so I stopped by before work,  Shay was very funny, the first words out of her mouth were OMG!  I'm so sorry, I realized what I said after I hung up.  We had a good laugh, and I let her know that "Dr. Lobo" and "ASAP" are not to be said in the same sentence ever again, unless it's an emergency. 

Luah

There are so many different types of cancer, I don't think there is any single or simple answer. Genetics, lifestyle, environment, hormone/metabolism, virus/immune suppression - one or more or all of them factor in. You can drive yourself crazy trying to find a root cause and constructing some kind of intervention that may or not work. Eat right, stay fit, sleep well, enjoy life, all things in moderation....that's my opinion.  

christina1961

Bak, That is just a terrible thing that happened.  So sad for those poor children - wish that man had just taken his own life instead if that is what he wanted to do.  I will never understand why people want to hurt and also want to throw their lives away.

McCrimmon, I think stress and genetics have a lot to do with developing cancer.  I also blame the BC pills I took off and on.  And then I wonder about the fact that I started getting mammograms when I was 19- I don't think I had them every year but that was so long ago (I'm 51) that probably the radiation exposure was much more then.  It doesn't make me feel very good to know that the doctor who had the brand new mammo machine in his office was later found to have disciplinary problems with his medical license.  Who knows if his mammo machine was properly serviced and regulated? I deal with a very stressful person in my life and I'm going to have to find ways to reduce my stress. I also come from a family with lots of different cancers - esophageal, colon, prostate, and my sister had breast cancer.

Also - my sister had not been in to the oncologist for months but they called her and left a message that they needed to see her right away.  She was freaking out - when she got there, it was something mundane - and she later realized that there would be no test or bloodwork or anything they could have had an issue with because she hadn't even there - so she was laughing at herself for getting so worked up. My oncologist told me yesterday to not eat sugar - and he also told me that because I had the 5-10% of ER receptors that I won't be out of the woods for recurrence after 5 years like most TNBC because an estrogen positive cell could pop up after 5 years of the anti-hormonal treatment.  :-((

mccrimmon324

I have a question about sugar.  I'm trying to cut out processed, refined sugar like you would find in ice cream, cookies.....  But what about natural sugars found in fruit like bananas and grapes.  They are both pretty high in sugar content. 

I was on BC pills for a long time too, now I hate that I was.  We've had some cancers in my family as well, both grandmothers and my grandfather.  Don't really have the aunts or uncles so I'm not sure about that.  There was a woman who used to come on this thread, I talk to her by phone or email regulary, but the forum is just too much for her.  Years ago the gyno she had told her that she had stage IV cervical cancer and needed to have all of these tests done.  She was 19 at the time, completely freaked out and did everything he told her.  One day at an appt the nurse pulled her aside and told her, between you and me, go find another Dr.  He's doing all of this to make more money.  She never had any kind of cervical cancer!!!  Sadly, she was too young to go after him legally, she just wanted to get away from him and didn't think of anything else.  I thought Drs are supposed to swear an oath to care for people not screw them over to make money for themselves??  It's a crazy world, you have people like that who only think of themselves and they are perfectly healthy, then you have good people dealing with life threatening deseases, or children starving....

I feel like I'm rambling today, sorry. 

mccrimmon324

Ks - My husband is / was one of those kinds of smokers.  He could have a couple of cigarettes if we were out having a couple of drinks and that was it.  He wouldn't bother with them again until we were drinking.  He was once a full time smoker but years ago when we moved into our house he just decided he didn't want to smoke anywhere in the new house and kicked me out to the garage.  I was always so envious that he could just stop like that. 

I chose to quit last year right before we were going on vacation with other people and I just made up my mind that I didn't want to be the only smoker and make people wait for me to finish my cigarette, etc....  Surprisingly the first 3 or 4 days were the worse then I had no problems.  I had quit in the past but always went back.  I guess it was just my time. 

laurajane

Interesting! I've never been overweight, always ate pretty good and have always been very fit dur to landscaping all of these years. I think stress is why I got it. My husband died unexpectedly, and I still don't think I've really gotten over that. Then my dad who was one of my best friends, then my unexpected pregnancy that had to be aborted then my mom passed. A couple of weeks after my mom died I felt the lump. I don't know I know other people have been through a lot more stress but I truly believe this all accumulated to my FC. I also believe finally getting out of the mentally abusive relationship goes hand in hand as to why this Halavan might be working. On that note I think I'll meditate today. I've also been craving sugar more than I ever have in my life. I wonder if it's the cancer that's being killed is what's really craving it. I'm going to try and stay away from it today.I've been eating ice creme, cookies like every night. I've always craved salty foods never sugar. Weird isn't it? I get to babysit my grandson tonight or tomorrow so my daughter and son in law can go on a date. I'm looking forward to it. I'm so happy that I feel good and comfortable enough to do this. We will have fun. I hope you all have a great day.

mccrimmon324

Yay for babysitting!  Laura don't belittle your stress, I don't know how I would have gotten thru what you have, you really are an amazing, strong woman.  I'm so sorry to hear of your losses.  Again, I can only speak for myself but I do believe my FC started with my mother's downfall.  She did die unexpectantly but had lost her leg due to diabetes almost a year before she passed.  She had spent the last two years of her life in and out of the hospitals (mostly in) trying to save it.  She died of a heart attack a little under a year of her amputation.  None of us expected it.  I think those years of watching her suffer were too much for me and FC just happened.  Like the Perfect Storm. 

I think if you want some ice cream you should have it.  I know it sounds like I'm crazy but during treatment I sort of wanted my cancer cells to be active just so they would suck up the chemo and die.  At least that's what I would envision.  Once Chemo ended I started trying to be strict on sugar... 

christina1961

LJ,  I'm so sorry for all your losses.  You really went through so many in such a short time. I was close to my father, too. He passed away in late 2006 and I still miss him so much.  I was so lucky to have a father like him who was there for me always.

Have fun with your grandson!  Little children are so much fun- I don't have any grandchildren, but my sister does, so I "borrow" them.  When I didn't have any hair and wore a wig, the 5 year old told me I had pretty hair! 

Heather,

This doctor with the mammography machine probably needed to pay for it - I think that is why I had so many so young.  I have always had fibrocystic stuff going on so that was his rationale for having me have early mammograms.

I think high glycemic fruits and vegetables are probably not good, either, but not sure.  I don't know if it is the insulin surges that need to be avoided or what.  I am going to try to limit insulin surges by eating more brown bread and rice, less potatoes, etc.  I only eat fish, eat pretty healthy, have never really been overweight and used to be pretty fit for most of my life until maybe the last five years. I have one more chemo treatment next Friday and then I'm finished so I will start focusing on my exercise, meditation, and diet program.

mccrimmon324

I'm interested in learning a bit more about meditation.  Do you know where I should start?  I know nothing now. 

I've pretty much cut out white potatoes.  Sometimes I make a large pot of Lentil soup and the recipe calls for 2 white potatoes so I figure the small amount I get in a serving isn't too bad.  Other than that it's brown rice, wheat bread, wheat pasta, sweet potatoes and lots of beans as far as carbs go. 

laurajane

McCrimmon- I'm so saddened by the horrible loss of your mother. What a painful couple of years watching her suffer. On a different note, the whole sugar thing is so fascinating. I just received a very interesting post from Babs and I'm hoping she will repost it on here. The whole Metformin thing is fascinating. I'm going to see if my onc will prescribe it. I had thought about it a while back but then forgot about it. It sure makes sense to me. I guess I'm fearful of every bite of sugar feeding my cancer but then what you said about keeping it active makes sense too. I want it to be eating up this Halavan like crazy. Thank you.



Ks Mathews- I am so sorry about the loss of your BF. How tragic.



I'm going to do something productive today. I'm not sure what but it's going to be something. LOL.

Spica16

Hi beckyv -  I just finished my last DD Taxol last week. I'm done with chemo!!! 

I did the 4 DD AC and 4 DD T, with a Neulasta shot the day after each chemo.

AC was miserable for me. I felt queasy from day #3 to #10, but then felt okay, except for fatigue. Taxol was sooo much better! I had NO queasiness, but fatigue is definitely still a problem, and it seems to accumulate. I did have bone pain, with aches and pains all over, but this subsided as the days went by. I have MS, so my symptoms were surely increased due to it, with my weak areas (legs, especially) suffering more. I have MS fatigue, so chemo fatigue just piled on more. You may not feel it as much. I developed neuropathy in my fingers and toes after the 3rd Taxol, but it is subsiding a little more each day. I seem to have more energy each day, also. I felt better a lot sooner with each T cycle, and by the last one, I felt good by day #5! I am doing more each day, and just rest when the fatigue hits. Now, my concerns are mostly cosmetic...bald head and face, and funky nails.

If you are doing well on AC, you may do very well with Taxol. Talk to your MO and the nurses, if any symptoms arise. They can usually find a way to help you handle them. Be kind to yourself and get plenty of rest, if you need it.

Afterall, your mission is to get through those 16 weeks and to be on that cruise ship in June!!! Enjoy! ~ Shar

P.S. I'm feeling good now (end of week #16) and ready to go fishing...just waiting for Spring! 

Babs37

Here is the post that was written today by a husband about Metformin on the Boards:

****ladies, I found this discussion and I need to weigh in here and tell you a story about Metformin and it's effect on breast cancer-at least one type.

My wife, as of Christmas of 2011, was given 'a few months' to live. She was first diagnosed in 2008, no chemo worked but radiation shrunk the IBC affected area enough for surgery. In 2009 it came back. Over the next two years, nothing worked and we are on our 3rd oncologist, who told us a few days after Christmas that we were looking at a 'few months maybe' and that there wasn't anything left to try.

I put her on Metformin myself (I was desperate) and a few days later convinced her oncologist to prescribe it after handing him about 100 pages of all the preclinical studies that you can all find with a google search.

They now call her 'The Miracle' at the cancer center. Her Inflammatory Breast Cancer was very advanced skin mets, had crossed over her chest, begun to crawl up her throat and into the soft tissue in her throat and was literally choking her. A month later, it is in retreat.

She is her2+, and her oncologist believes that this may be important, he's organizing a trial (it's a university hospital, that's how we ended up here.) and has a handful of women on it already, although they aren't presenting much in the way of skin mets, so they have to wait for scans to see if it's working for them as well as for my wife.

You have to understand, she's had every chemo there is-and got next to no response from any of them, other than her spread has been slow, so I supposed given that she's got IBC that means they were working to some extent, but not well enough. Last year, Christmas '10 her first oncologist told her to 'accept reality' and that there was nothing more to do for her. I found a TDM-1 trial that would accept her (a miracle given how heavily pre-treated she'd been) but it didn't work. Then they sent us to our current oncologist, and she was on RAD 001 for awhile, and it seemed to work a bit for awhile and then stopped.

All hope was lost just six weeks ago. It's been a miracle. What was nasty, dark purple and swollen hard skin is now pink, healing, and soft skin. She's had an open wound for over a year (thanks to post Avastin flareup) that is now visibly shrinking, scabbing around the edges.

She IS on carboplatin and gemzar as well, but her doctor thinks (and I think too, as none of the other nasty chemos did anything positive for her-and she literally had every single thing that was FDA approved) that the metformin is the key.

It may not work for everyone, it may have something to do with the her2 status, but it is absolutely worth a chance if you can.

For what it's worth, she's had very little side effects other than she does tend to 'crash' a bit about 30-45 minutes after eating a meal. We both think, actually, that she's kind of always been that way but it's a little more noticeable now. A little fruit juice or an apple or something and she's fine. She is not diabetic although we both believe that something was up with her blood sugar before given the fact that the metformin is working so well and the 'crashes'. She is in the normal range and they are monitoring her very closely.

I just wanted you to know. I am telling everyone I can. This drug hasn't been pushed because there's no money in it but it just may be the answer for you! I know it was for us. I'm not exaggerating, a noted her2 specialist had given up and sent us home with a bag of morphine for Christmas. Now he's calling her 'the miracle'.

Please look into it.

Chris

OBXK

I think stress caused my recurrence. My mom died, my favorite uncle was murdered 4 months later, and my brother died 2 months after that at age 52. I read a study that said while they couldn't link stress as causing cancer, there does seem to be a link in high stress causing it to return. My husband spent years trying to protect me, but life happens.



I awoke with the feeling of razor blades in my throat again today. I had escaped colds all winter.



I hope everyone has a good weekend! If I'm feeling better by tomorrow, my 12 year old and I are going to see "The Woman in Black".

Titan

soo..what do you guys think of Tommy Jordan?  just loved that video!

I think that stress can play a part of cancer or any kind of illness...

I wish I could take Metformin but the onc says no....I'm going to ask my BS when I see him...if "Mom" won't let me..maybe "Dad" will....lol

christina1961

OB,

That is terrible that you lost your loved ones so close together and I cannot imagine how horrible it would be to lose a loved one to murder.

I just noticed the signs for The Woman in Black yesterday and wondered about it.  I am looking forward to being able to go to movies again.  Hope you are feeling better tomorrow.

Heather, A great resource for guided imagery mediation is Bellaruth Naperstack.  Look her up on the internet.  She has a great website and you can get a free daily guided mediation by signing up for the newsletter.   The social worker at the hospital gave me a CD from her series for mediation during chemo.  When I go to the social worker, usually we do a guided imagery mediation.  I am a workaholic, running around like in a frenzy type personality (at least in my head) so I usually come in there in a frenzy and she helps me learn how to calm myself.  I really never realized how much I need to slow down.  It is my understanding that the more one learns to practice it,  the better it works as a coping mechanism.

I better get back to work; the Halaven is starting to kick my butt. I've got some more work to finish before I'm free for the weekend.