I'm back after 21/2 years:(

rpailleret

Just returned from Dr. with my PET and MRI of the spine results...He did not give me any information....Just take it day by day....I am having a MRI on my liver (blood work normal but PET scan says otherwise)

could anyone help me with this: My report I had copied: There are spinal metastases which involve most of the cervical, thoracic and lumbar spines.  Impression: Diffuse Bone Metastases....He also states that he believe there are liver metastases as well....This can be confirmed with an MRI...

I had my records faxed to Sloan Kittering Hospital in New York City but it may take time to get in.

I am 40 year old mother of two children and I am scared...I am trying to stay positive but felt my chemo dr...had no hope for me. My family just looks at me with fear...

Please help I had to wait 10 days for my results due to my chemo dr. on Vacation...This waiting is just horriable.

I started reading the New Anti Cancer book which is facinating...I wish i had it when I was diagnosed...

I would love to hear any advice!!!

Love and Hugs,

Rachel

Brendatrue

 First, Rachel, gentle hugs to you. Second, a reminder--many women on this site have learned to manage spread of their disease with treatment, life changes, and support. Third, there is hope! Many who share your profile will likely visit your post and offer you stories of how they deal with bone and liver mets--some for years now, and how they continue to have hope and to cope. Fourth, taking it day by day is a reminder not to project yourself too far in to the future and a reminder to gather all the info you need to figure out your next step(s) in treatment. Fifth, my family became really distressed when I was diagnosed with advanced disease in January. I realized that I had to educate myself as well as them so that I did not have to deal with their distress (and at times their hysteria) every time I talked with them. I also encouraged them to do some research on their own so that I did not have to constantly educate everybody. Sixth, remember, you can always come here with questions, for pouring out your heart, for help with coping. And seventh, please let your MD know if you have trouble sleeping during this time. I had to take temazepam for a while, and I really was glad to get the much needed rest, which helped me to cope with all the strain of the diagnosis and treatment. I will continue to hold you in my thoughts and to check back here. And now, another gentle hug.........Brenda

rpailleret

Brenda,

Hugs to you.....Thank you.

Rachel

spar2

Rachel, you hang in there, there are so many treatment options.  Tonight my best friend called my, she has breast cancer mets to liver and bones and she has been on a clinical trial and every 2 months she has scans and guess what!! Today her test showed remission.  Even though she has to continue herceptin the rest of her life she is in remission.  So it does happen.  God bless you.  Hope you get your treatment plan going soon.  Never, ever, give up.  hugs. Sherry

JeninMichigan

Rachel

 Have hope!!   My original dx was stage IV with mets to liver (multiple lesions) bone mets to my hips and right ribs plus a supraclavical node.    I have been NED (remission . no evidence of disease) since June 2008.   Just had another PET 10 days ago and still clean.    Not even any bone damage.    It is a huge blow and like someone punched you in the nose.  BUT, lots of us manage successfully.   I have two kids so I know what you mean... makes you scared to death.   My first oncologist said he would treat me for qualify of life.... NOT GOOD ENOUGH.  My second oncolgoist said she is shooting for NED and a long long life for me... that is what I am shooting for too.  So should you!!!

Jennifer

kittycat

Good luck to you.  I can't believe the dr had you wait 10 days.  I have the anti cancer book.  my husband bought it when his dad and my sister were dx with breast cancer last year.  It's a very good book.  The author is a cancer survivor. 

Great posts from other members about shooting for NED.  Take care and hugs!

rpailleret

I was hoping that someone had read and answered my post....this is what I needed to hear!!!!! I want to send my love out to each and everyone of you.....Thank You!!!!!!!!!! I am changing Onc. immediatly, well as soon as sloan kittering will get me in. Any adivce in the meantime?

You are all in my prayers...Sending out love and hugs!!!!!

Love,

Rachel

rpailleret

What kind of treatment did the Dr. put you on? Who should I see regarding the bones until I can get into a new Onc???

Hugs....

Rachel

pitanga

Dear Rachel,

I am so, so sorry you are going through this. It must have been horrible to have to wait for so long, and then get this kind of news.

I agree with Jen--get another opinion. I am a firm believer in 2nd, even 3rd and 4th opinions. Why does your onc think you have mets to your liver?  Tumor markers? From what I understand, these are not terribly reliable. It is amazing how opinions can vary. I went through the wringer getting a mets diagnosis a few months ago and I ran around getting different opinions until a consensus was reached.

Wishing you strength and courage as you make your way through this very difficult process,

Lisa

hollyann

Hugs Rachel.....i am so sorry you had to come back......What was your original dx if you don't mind my asking?......I just want to let you know you are not a statistic!......There are lots of long term survivors here with mets.....Bone mets are very treatable and even liver mets can be treated.....From what I understand with bone mets it is considered a chronis illness and can be controlled and put into remission for years.......I am so sorry your doc made you wait so long.....Please tell your family what I just posted about chronic .......You can get control over bone mets and liver mets can be healed...i have seen it happen on this board.......

LittleFlower

Rachel,

Just sending you gentle hugs, and prayers for a quick appt at Sloan. 

Thinking of you,

LittleFlower

rpailleret

Thank you!!!! Thanks for the prayers because Sloan called today, they will see me Sept. 15 . I just found out From Cancer Center of America that my insurance will not cover any pre existing conditions for a year....They will not cover a thing, so Cancer Center of America could not see me. We will have to see what Sloan Kittering says. I will stay postive but a law with pre excisting conditions should be passed stopping Insurance companies from doing this!!!

I don't know if anyone can help me with this:

My blood work for the liver was normal...BUT the PET scan tested mets...I am having an mri thursday to confirmed this.

My Onc at the moment just gave me Zometa....They did not warn me of the pain I would experience or flu like sytems the next day....My mom had to call and they said I would feel like this for 2 days and advised me to take 2 tylenol and 2 advil.

My orginial DX was stage 2b and 9 lymph nodes involved.

 I just started Tamoxifin and zometa...What scares me is the bones mets are in my spine, cer\vics and other places....

I want to thank you all for such encouraging words!!! Its means a lot to me.

I started detoxing my body and cutting sugar out completely...I am following the anti cancer diet.

LittleFlower

Rachel,

Great news with that appointment!  I think you'll be in great hands at Sloan - it's a major cancer institute.  I don't know much about cancer centers of america, but i don't think you're getting second best with Sloan.  Ok, so here are more prayers, that the liver PET results are just false positives, that your liver is totally clear!  Also that the Tamox. and Zometa kick some cancer A$$!

Hugs, LittleFlower

LittleFlower

also curious Rachel, which anti cancer book is it?  Whose the author... interested in starting something like that myself...

rpailleret

Little Flower,

Thank you!!!!! The book is Anti Cancer a new way of life. Author: David Servan-Schreiber, MD, PHd,

I am attempting this weekend to make Miso Soup with seaweed!!! This book is incrediable it really explains a lot regarding cancer...And most important it gives us hope!!!!

thanks for the prayers!!!!!! You are in my prayers!!

Hugs,

Rachel

Brendatrue

Hi, again, Rachel--I'm glad to hear that you got an appt at Sloan K and that your MD has already started you on Tamox and Zometa. I just read the Anti Cancer book a week or so ago, and I am interested in many of the strategies the author suggests. I realize that there is controversy around what we can do to help our bodies heal, but I do look for ways to contribute to a healthy body and environment with the hope that I will be able to influence very positively my future health. I also read Picking Up the Pieces, which has many strategies for promoting physical, mental, social and spiritual health in people who are coping with cancer. Althought the focus is not on living with advanced disease, the book has some really thought provoking ideas and suggestions for coping with cancer and its impact on our lives. I wish you well with the new meds and the new strategies you are trying! Keep us posted on how you are.

rpailleret

Thanks Brend!!!

I have a mri of the liver schedule tomorrow...Keeping it in prayer.

did anyone see Elizabeth Edwards on Larry King....So proud of her!! I am still in shock my insurance will not cover my cancer...Pre existing condition....

rpailleret

Hi everyone,

Hope you are all feeling good. I had my mri of the liver...scary. When it was over the tech. was very quiet....Do you think they know anything at that moment? Ok the waiting again....I have to wait until Monday, I have to pray for the courage to go back into the dr. office.

I am putting all this in God's hands.....

If anyone is interested I was able to locate the actual mangosteen fruit. I have to say it took weeks to find this information: Frieda in Ca...I placed a order today, will keep you inform.

I also order graviola.....Will keep you inform as well.

God Bless and thank you so much for all your kind words...

Love ya,

Rachel

Anonymous

Hi Rachel, I'm pulling for you too.  Hopes and prayers...

LittleFlower

(((((Rachel))))))

It's hard not to think about the techs reaction/response.  I think the doctor should let you know right then and there!  I know that's not practical, but wouldn't it be easier? 

You're in my thoughts and prayers.

LittleFlower

rpailleret

Thank you.....Hugs

Brendatrue

Hi, Rachel--I hope you have a peaceful weekend. I know how it easy it is to "read into" those radiology techs' behaviors, and I usually remind myself that they just don't have the skill to interpret and they are probably caught up in a whole bunch of other things at the moment any way. Of course, it is so difficult not to be anxious while you are waiting, waiting, waiting. I will check in again early next week to hear about results and how you are. Peace-----

rpailleret

Ok...I need to take a deep breath....It is in the liver and spleen...What am I going to do. I have no appetite (because of all the news???) I went to see a Chiropractor who is helping with some detoxing foot bath and lasering...My medical records were faxed over and the new MRI was faxed as well..We read it...I have to see Onc. Dr. Nahza sometime today for the offical results. What am I going to do?????

Thanks for all the encouraging words.....

Love,

Rachel

Brendatrue

Rachel, My heart goes out to you...I am sad that this has happened. HOWEVER, I also continue to hold hope for you, and I hope that you will remember the words of both Sherry & Jennifer, who talked above about similar situations and the positive outcomes in both of those situations. Many women who have visited BCO have told their stories of living with advanced breast cancer and how they have experienced various phases of illness, including the NED phase. I remember how I felt like I had been "sucker punched" when I was told earlier this year that I had advanced cancer and how hard it was at first to fight the terrible anxiety. I often felt like I was on a roller coaster of emotions and thoughts, and I received various treatment options from different MDs, which also added to the "rollercoaster" effect.

You mentioned a plan to see your Onc today; how did that appt go? Are there any changes in your current treatment planning? Will you still be going to Sloan on 09/15? I hope that you are tolerating the Tamox & Zometa well. I know it can be terribly hard to wait for appts, especially when you want to know that you are doing all you can to deal with this illness. Remember what you are already doing to support healing and try to focus on one day at a time. I know that it sounds trite, but sometimes just staying in the present as much as possible will help you to cope. Do you have any trusted friends or family members who are willing to listen as you share your experiences and concerns? Of course, you know we are here for you, but having extra support is useful as well. Please know that I will check back here tomorrow and that I will continue to hold you in my thoughts.

LittleFlower

((((RACHEL)))))

It's time to find the right drug that will wipe out the cancer. I'm so sorry.  I know that words can't make this better but i hope you know you're cared for and thought of often.  Sending you calming vibes and you're certainly in my prayers tonight.  BIG GENTLE HUG

LittleFlower

Brendatrue

Rachel--Just checking in to see if you had given us an update and to let you know that I am thinking of you.

Anonymous

Rachel,

Hi.  Just wanted to know how things are going for you.  I was also just diagnosed with a recurrence.  I'd like you to know that I am sending you good, positive vibes to give you strength during these difficult times.

Maryiz

Rachel, there are many new therapies emerging, and rapidly at that.  There are many women that do go into remission for significant periods of time.  My oncologist told me of one of his patients that died of Alzheimers, not BC.  She had been treated for mets with chemo and went into remission until her death at a much later date.  He has many, many patients who have been dealing with mets for years.  The treatments they received were 20 years ago.  We have new and better drugs.  There was an article printed in the UK about the belief that cancer can be stopped with the reprogramming of our MicroRNAs, very reputable source.  If you look up Dr, Stebbing and potential cure in 2 years, you will find it  Hang in, we are almost there.  Maryiz

LittleFlower

(((Rachel)))

Just thinking of you tonight.  Hope you're feeling well.

Big hugs,

LittleFlower

Brendatrue

Rachel, I am holding you in my thoughts right now. I hope you have found some answers to give you direction in your treatment and in your plan for coping. Remember that we are here for you!

rpailleret

Sorry about the delay in posting...It has been a rollar coaster of a ride so far:

1. I am waiting to get into sloan Sept. 15th appoint.

2. Insurance clause: Pre existing condition not covered for 1 year (Feb. 2010)

3. Called the cancer center of America to see if they had some sort of charity care: No charity care. I did ask for a consultation (paying out of pocket) Sure they said with 250,000.00 DEPOSIT.

We are now looking into Issels in Mexico: It is 41,000 for 1 month and 3 vaccines (with your own blood cells to fight back) 5 years covered in treatment.

Does anyone have any information on Issels I would so very much appreciate it.

No dr. wants to see me regarding this because of my insurance....I keep praying!!!

Love,

Rachel