Shocked

Anonymous

Hi all,

Some of you might remember me posting about a year ago about my wife, Olga (33). She had Stage III tumor removed last December (after receiving FEC and Taxotere chemo), then rads for 5 weeks. After that she was announced healthy. And we enjoyed life, summer, each other. We went kayaking, kanoeing and what not. The kids were so happy their mom came back from the other side.

And now somebody up there  thinks we've had enough good time. The biopsy from the lymph nodes in the groin that became swollen a week ago came back positive - adenocarcinoma. The word we hoped so badly we'll never hear. She has pains in the bone of one leg. A low grade fever. She's coughing a bit. Those all are symptoms of mests in lungs, liver and bones. The MRI of the liver will be prerformed tomorrow mornin and next week we have the bone scan and CT of the chest. In the meanwhile, US of the pelvis and spleen came back clean, CT of the head - clean, there's something in the X-Ray of the lungs and again, something in the US of the liver. Blood test - one of the markers is slightly elevated, but Calcium is normal. So, we hope, we caught it early enough. 

In the meanwhile, she started taking Xeloda on Wednesday. 

The onc at PMH (Toronto) said, if everything has the mets, she's got around 3 years. No way, we're gonna fight. We've got another 50 years in front of us. I love her so much. The boys love her so much. We just can't lose.

But I'm scared. Oh hell, how I'm scared. Especially when she cries.

Anonymous

leprechaun,  I am so sorry over this news about your wife. I know you are scared as hell.  I think it was wrong of the onc to give a 3 year time limit to you both.  Of course you will fight, and maybe find another onc with another course of treatment.  Another thing you can do is talk to the Stage IV ladies.  They are all wonderful and have gone thru hearing the words reoccurence and mets.  They will have some good advice on the latest treatment options, and how to deal with all that goes with this beast that reappears.  You and your wife will be in my prayers.

Estepp

Oh honey... I remember you two... FIGHT!... Yes, that is what you are going to do... just fight and WIN!

Remember.. the longer treatment works.. the more time we have for a cure...

God Bless.. and fight on... but also.. keep living that life with your family.. have FUN!

Laura

lexislove

Hi there.

I remember you two. Your wife did neo adjuvant chemo right? And your in Canada if Im correct.

Im sorry about this recent news, I'm sure some woman with stage 4 will be along tomorrow to help with your questions.

konakat

I'm so sorry about your wife getting mets.  Don't think about the 3 years.  I'll be at my 3 year mark this spring and I'm no way finished.  You wouldn't even know I had mets.  There are lots of chemos available and many women have been in remission for years.  I haven't tried Xeloda yet but many women have had great success with it, and quick results.  Live each day to its fullest, something everyone should do regardless of their health.  Good luck to you and your wife, and wishes for many, many more years together.

Elizabeth

Anonymous

Leprechaun, I just want to give you and your wife a big hug.  I know you're scared.  Mets can be controlled.  Like Elizabeth said, she's almost in her 3rd year.  I won't even tell you to think "positive."  I get frustrated when people tell me to do that.  No doctor can tell you that your wife has three years...that's just wrong.  Like the ladies said, there are so many chemos that she can try.  You'll be in my thoughts and prayers.

Shirley

Anonymous

Thank you all for the support!

@ lexislove: Yes, she received neo-adjuvant chemo. We're in Thornhill, Ontario.

Ditasea

Leprechaun, I am very very sorry to hear the news. All I can say is: keep up the hope. I was mistakenly diagnosed mets to lung and liver a month ago, then it turned out to be a vulgar cyst in the liver that I´ve probably had for life, and some scar in my lung from a childhood bronchitis. My onc told me such mistakes in diagnosis are quite frequent (he called them "frights"), because a lot of the screening tests are quite unprecise. Just don´t jump to conclusions - wait until you know for sure...

And then again, if it SHOULD be mets, I doubt any onc can give precise "dates". Nobody can. Every one of us is different, and a great many patients survive for years and years. My onc told me once never to believe statistics, because so many people fall outside them. And never forget research and medication are improving day by day. So even what today can be "three years" might change to "forever" with some new medication they might develop as soon as next month! This might sound like wishfull thinking, but it is based on fact: its precisely what happened to HER2+ girls with the discovery of Herceptin, which changed their prognosis from "very bleak" to "very positive" in a matter of months. So I can´t see how the "three years" can in any way be a realistic prognosis!

Will keep thinking of you both. All my love and support. 

Anonymous

Ditasea, thank you so much. It really feels sometimes we should hold our horses!

3katz

leprechaun - Ditasea is very profound and has put into words exactly what I was thinking. I know it is difficult and very scary for you - you must feel like you have no control. My husband is the same way. I think he took the news harder than I did (his mom died from bc when he was young) and I can see the pain in his eyes when I'm hurting and/or upset. He can fix the garage door opener, he can fix plumbing in the house, he can fix anything electrical, he can fix just about anything . . .  but he can't fix me.

Your wife is very lucky to have such a supportive hubby. You sound like mine and I know how lucky & thankful I am for him. He is my rock and I don't know what I would do without him. Keep supporting her.

I have heard very good things about Xeloda and have high hopes since I just started it myself last month. New meds are coming out all the time so there is no way a life expectancy can be predicted. Continue to enjoy life as much as possible no matter what the outcome.

I hope for the best for Olga and you and your family. Please keep us posted.

Anonymous

3katz,

 Thanks so much for your words. You know, when the first shock settles in, the thoughts are much more reasonable.

I do understand how your husband feels. That's just our male nature - we like to keep everything under control, we like to be able fix things. And when something like this happens... oh, hell. You know.

Thanks again and take care,

Yan

Anonymous

The results are in...

MRI (Abdomen and pelvis). Multiple bone, subcutaneous and liver (suspected) mets. There's also a mass in the liver which they think is benign (almost no changes since more than a year ago and that's a largest one, by the way). Evidence of a left upper lobe lung mass and probable right hilar mass (only on limited images) - for further evaluation with a CT thorax.

CT (thorax).  No enlarged mediastinal lymph nodes. No pleural fluid. Central tracheobronchial tree is clear. There's 3.7 cm mass in the right lower lung lobe, 2 cm nodule left upper lobe, both suspicious for mets and both are accessible for biopsy.

Bone scan. Innumeral interval mets  throughout the axial skeleton. Also they've seen lesions in left zygoma, right supraorbital region, both bones of the left leg and the tibia of the right one.

So, based on all this, I would expect much more severe symptoms. But she's full of energy. The cough is almosy gone, the fever is gone. The only thing is a pain in legs but it's being successfully suppressed by only two to three pills of Advil daily. Liver and lung, as I understand, will must be verified by biopsy.

We'll meet the onc next week. Let's see what he says.

In the meanwhile, she's so optimistic. So strong. It's a first day of Hanukkah today, so she baked donuts (delicious!) and we've had a decent celebration. So, to all the Jewish readers here, I wish a happy Hanukkah. And may the little Hanukkah Miracle happen!

konakat

I'm sorry about the the mets for your wife.  You can live well with mets, your wife and many others proof of this. I wish you and your family a very happy Hanukkah and for a little Hanukkah Miracle too.

Anonymous

Thank you, Elizabeth!

Anonymous

Ya know, Leprechaun, you're wife has the right attitude.  If she's feeling well that is a great thing.  She seems like such a strong person.  And she's continuing doing what she loves...great attitude!

Good luck at the onc's.  I bet something good's gonna happen.

Did you say home made doughnuts!!??  YUMMY!  I used to make them and cinnamon rolls. 

Anonymous

Thank you, Shirley!

Yes, home made doughnuts, without sugar and yeast and with cottage cheese. Yummy

Estepp

Leprechaun... it sounds like your wife has the best attitude.. and how wonderful all those donuts and traditions... you are blessed with that jewel!

Let us know...

Fidelia

Hi all, just to add - if the lung mass is operable - the biopsy should remove the current presentation - removing the problem - at least for now - if there are bone mets - treatment with either an oral bisphosphonate or zometa will help greatly - from the sound of things - you and your wife have the very best attitude and she must be very strong to enjoy so much outdoor activity - this is all excellent and as everyone else has mentioned - progress against this disease is ongoing and rapid. You and your wife have already dealt so well with this setback - all the best for the future

Fidelia

Anonymous

Leprechaun, we'll be waiting to hear the news.  I always come here to check on you and your wife.

One question.  Cottage cheese?  Do you eat cottage cheese with the doughnuts are do you put cottage cheese IN the doughnut?  I'm getting hungry!

tweetybird

Leprechaun,

What horrible news! Wish I was a leprechaun, and bring you some of the Irish luck, but I'll say some prayers for you and your wife.

Sounds like your wife has a great attitude, which will help. I was fortunate enough to "only" have DCIS, and still a nervous nellie when I get my tests done. Just wanted to let you know that a very dear friend of my parents was diagnosed with BC and was only given 6 months to a year, and she just celebrated 40 years of being cancer free! She definitely showed her doctors!

Janet

Please keep us posted on how both you and your wife are doing.

Anonymous

OK, so we're back from the onc visit. First thing, he said, there're no surprises in the tests and that's good. I came prepared with a list of questions and he liked that.

They took blood for the Vitamin D test and he said that I've chosen the right dosage for her meanwhile and that the fish / flax oil is good too.

She'll start receiving monthly IV with Aredia (bisphosphonate drug) for her bones. The first one will be on Dec 31.

We insisted on rads to the left leg where it pains.

He was happy to know she has no SE at all (knock-knock) from Xeloda yet. Today is the last day of the first cicle.

I asked him about DCA and he said there's no enough information about that yet.

He was very pleased with our attitude. Also, he said they might start trials of Gemzar + Cisplatin + PARP inhibitor. There's a study in the US already going on and it looks very promising particularly for triple-neg.

Anyways, Olga's leg is painful, paradoxically, almost only when rested. When she's active, she feels fine. So that's another stimulus to keep moving.

Also, her pains lessened just a bit. Might this be Xeloda? I hope so.

Shirley, the cottage cheese goes IN the doughnut.

Janet and Fidelia, thanks!

RobinWendy

Just want you to know that my Hanukkah present this year is to celebrate 6 years since finding out I was Stage IV.  I have mets in lungs and liver and have been asymptomatic all this time.  I had an onc tell me I would not live five years... don't let anyone tell you when your wife's expiration date is!  This woman was wrong about me and hopefully your onc is wrong about your wife!!

Robin 

Anonymous

Thanks Robin! That's one inspiring story! Wishing you to celebrate this till 120.

Ditasea

Hello again, Leprechaun . Sorry to hear the news - still, everything I said in my first post is still true!! I am confident she will respond well to treatment, and that further research will eventually definitely cure her. I think both your attitudes are great, and a huge inspiration for all of us - keep it up!! I also think it must be such a comfort to her to have such a supportive husband - that alone is a blessing!

All the very best for the two of you! 

tweetybird

No problem Leprechaun! I'll be here praying and cheering you and your wife on to victory!

spar2

I am praying for you and your wife also.  What a wonderful husband you are staying on top of things and being there for her.  That is so important.  God Bless you.  Sherry

lvtwoqlt

Leprechaun, about giving a time frame by the doctor. My uncle was diagnosed with pancreatic cancer April 08, the original doctor who diagnosed him told him he had 3 - 6 months to live. He refused to listen to that doctor and went to University of Ohio Medical Center and has joined some trials there. He is at 20 months since diagnosis and the meds that he is on now is keeping him stable. He told my mom and dad at thanksgiving that he was celebrating his 2nd thanksgiving. I know it isn't BC but pancreatic cancer is one of the harder ones to treat and they are constantly finding new meds for mets.

Sheial

Anonymous

Thank you all! You're the best support group I've ever seen.

konakat

Awww, now I have a craving for a cheese bagel -- haven't had one for a while -- I'll investigate tomorrow when I'm out -- there are 2, count 'em 2, bakeries just down the street -- and they both specialized in breads!!!

Good luck with the Aredia -- it's not bad at all. Your wife might feel a bit achy for a day or two, but that's it.

Anonymous

Rads business is dropped for now... Olga's leg doesn't sore for the third day in a row and we went to see "Fiddler on the Roof" last night. Today she went to the radiologist and he told her that he has a bit of different interpretation of the same bone scan. Said he thinks her pelvic bones are bad and the spine too. Said he'd do some rads on these places in order to strengthen them. She'll have a CT tomorrow and maybe MRI for him to understand more because he doesn't trust the bone scat too much, it's not exact.

But he said also (and that's a bright spot in all this mess) that Xeloda is definitely helping her, she responded very well to chemo last time and there's no reason to not do so again. She's feeling just excellent and optimistic, I wonder where she gets all that strength from. 

To be honest, each time I hear they think this and that, my heart starts shaking and I get the panic strike. Like I hear the banshee screaming above my house. It takes me  a couple of minutes to recover and then I just push all the b******t out of my head and concentrate on the full half of the glass.

The cure is around the corner, it must be. Every day there's some discovery, some good news. And I mean that, every damn day. 

Sorry for making waves... Just needed to vent.

Yan.

Nico1012

Yan ~ Has the onc discussed Zometa? I'm very interested in bone mets treatments and that is one that keeps coming up in all of my research. As yet, I can't find a journal article indicating a negative result from Zometa.  AND vent all you want, we are hear for you and each other through good news and bad, celebrations and rants!

Nico