New mets!!..... already??!!
 

I dont know I guess it must happen... but a bone scan I had last week showed up post-operative extension of the mets to my femur and new activity in my third rib and my sternum http://her2support.org/vbulletin/images/icons/icon9.gif - and I only just had my last bone scan in November.

I'm currently on Taxotere and Herceptin every three weeks and am about to start one of the bone strenghteners on Tuesday. I had this recent bone scan as I have been getting extra pain along my thigh. It just all seems to be happening so quickly.

Maybe the treatment takes a bit longer to have some effect?? I dont know... I have yet to talk with my Onc. re the results.

Sorry I dont post too much ladies... I am so tired... but I do read nearly every day and share in your joys and challenges!

Thanks so much for listening.
Blessings all
Hermiracles (Who are 10 months old now!http://her2support.org/vbulletin/ima...ons/icon10.gif)
http://i14.photobucket.com/albums/a3...ling10mths.jpg

Hermiracles, so sorry to hear that you have more bone mets. Perhaps your onco can give you some news about this that will make it sound not so bad. I think of you often and will pray for you. Your babies are adorable.

Hello ~

I'm sorry about the progression of bone mets. Also, I wanted to say that "your miracles" are truly precious. Thanks for brightening my day with those beautiful faces.

Mary Jo

Hermiracles, I hope you get to see your oncologist soon.
And I just wanted to say how beautiful those babies are!

Spoke with the oncologist
 

Hi Sheila, Becca, Marejo and Bonnie... thanks so much for your responses. I got to speak with Oncologist today on the phone.. and I feel.. well.. dissapointed.http://her2support.org/vbulletin/images/icons/icon9.gif
I just dont feel confident this guy is going into bat for me.. he is very laid back about it all. Not really concerned about these new mets at all. He is the only oncologist in town and very busy.
He said 'oh well they could have been there before and only just showing up now. The chemo doesn't seem to be working for you.. of course we would continue the Herceptin'... with no suggestion of trying anything else....what we are moving onto Palliation now??? I just feel its like he thinks 'oh well.. she's stage 4... not much we can do' I want to aim to get to NED if I can but I feel like the Onc has given up on me already.
Maybe I'm just paranoid about the medical system... never did have much faith in them anyway.... I dunno http://her2support.org/vbulletin/images/icons/icon9.gif I could ring the woman I got the 2nd opinion from but I feel I have to try and clarify things with him 1st.... just what is his attitude??? I feel so anxious now and think why should I have to worry about this.
Blessings all
Hermiracles

Yep, lots of questions and listening in order here. No matter what....it's a big deal because it's YOU!!! Maybe you could write out all the questions and suggestions you have and go thru it all with both. Geez, sometimes they have no idea how their words and tone of voice impact us. I'm praying for you and lovin' those little miracles! ma

Hermiracles,

I'm so sorry to hear about your progression. I would write a list of questions down on a paper for your oncologist. I know if I don't write a list I leave and then find I forgot to ask something. There are many treatments available to Stage IV women and it's just a matter of finding the one that's right for you. Your babies are so beautiful -- I love looking at them.

I agree about the list of questions. And you deserve a face to face, sit down meeting with this doctor when you ask them. Is there anyone you might bring with you to help "hear"? I found that was really helpful. It's good you have the 2nd opinion person in the wings too. Kep the faith.

I am saddened to read your last posts. You need a little time to absorb things. But don't wait to long. Bonnie R and Kate had a good suggestions. If possible take someone with you when you go in to talk with your onc face to face with your list of questions. Another set of ears has been so helpful for me.

Remember it is like a puzzle and you need someone who is going to find the right piece. That piece (treatment) will stop the progression.

You are in my prayers. The twins are beautiful and growing! I wish we were closer.
Donna

Your babies are so beautiful and precious. I am an identical twin. :)

You and your babies deserve a dr who is going to fight like hell for you. I'd urge you to find another doctor (I know it involves travel) OR do whatever it takes to get the message to this guy.

Thanks so much friends for all your suggestions. I spoke with the Breast Care nurse today - at least she was concerned about the new mets - she said - "it must be your tumour is very aggressive" - which is what I've been thinking all along.
She connected me up with the nurse in charge of clinical trials - who at least listened to me - but said there really aren't any trials available that I would fit the criteria. I did say to her - I dont feel Im up to clinical trials yet - that there must be a few more chemos I could try. She agreed.
Anyway she emailed my Onc. who emailed back saying.... continue with Taxotere for one more dose (next Thursday) and then we'll have another scan. So.....?? Im still none the wiser and not too good at negotiating the system at the moment.
Had my 1st dose of Aredia today so I guess that will help some.
Still feeling anxious and worried.... trying to refocus on the positive.
Im alive... and sober http://her2support.org/vbulletin/images/icons/icon7.gif.. today! And my bub bubs sure are gorgeous eh?
Thanks so much for being here friends.
Blessings all
Hermiracles

I am glad to see that the nurse is listening and taking charge...sometimes we need to "tune up" these Dr.'s, it is OUR life ya know! Looking at the picture of your little miracles takes me way back...32 1/2 years ago when my twins were born.....2 girls, what a true gift.....I was so busy as you must be, but I received so much love it made every struggle worth it...there are many new drugs out there for you, don't take no for an answer....your little ones are depending on you.
Sending love and hope.

Keep up the fight for those beautiful babies. You are in my prayers.

Hi Hermiracles,

First, your babies are soooo cute!

I too have bone mets and am on Zometa. I need to get more educated on the bone mets part but my doctor has explained to me that the bones react more slowly than other parts of the body. She says that the scans are more difficult to read and interpret. 2 years ago I had increased activity in the bones and it turned out to be flare effect and actual healing from the meds.

I recently asked about trials for bone mets and was told that between the chemo, Herceptin and Zometa we are doing all that we can.

It sounds like you are doing a good job of fighting for the attention that you deserve even though you shouldn't have to do that now.

Love, Hope, Peace, Carolyn

Yes, your bub bubs are beautiful! As Shelia says there are drugs out there. Just hard to know how to go about getting them. You are strong and will find the answer.

Give those little ones a squeeze from a grandma in IL.

Remember prayers are with you.
Donna

I hope they can find the right mix and stop those nasty bone mets....actually I hope your next scan shows improvement before the change. The babies are beautiful!

Hermie, your babies are so beautiful! Thanks for sharing the wonderful pictures. I'm sorry to hear the latest news, but please keep on those docs for new treatments, and like said before, typically, bone mets are slow to progress, and often the scans are hard to interpret. Try not to let yourself get too down, and whenever you go into a doctor's appointment or treatment, you just picture all of your sisters and brothers gathered around you making sure everything goes right ( and that goes for all of you!) You're in my thoughts and prayers, Love, Bill

I just wanted to let you know that I said a special prayer for you. Your babies are definately miracles. They are beautiful. Too bad we all don't live closer. I'm sure you would have lots of babysitters from this site. They're too cute. Mine are getting bigger now.
I am praying that the right treatment for you will be figured out quickly to slow down the bone progression. Like the others, I have heard that progression in the bones is slow and can be managed quite well.

Hang one, my dear, the right treatment is coming.

Hugs,
Tonya

Beautiful babies!! I am sure that their mommy is just as beautiful!

I am hoping that you will find just the tx to stop the bone mets in their tracks. Stay strong.

Hugs and Prayers,
Lexi

I agree with what every body is saying how beautiful your babies are. I also had twins, but they are 40 years old now. Hang in there my dear, there is a treatment out there for you. Have faith and know their are a lot of prayers coming your way., Blessings to you and your family, Jeanette

http://smileys.smileycentral.com/cat/15/15_5_3v.gif Beautiful bubbas!


Hey #1,
Yes, you are #1 and you need to go to bat for #1. Please have a very honest, sincere and firm talk with your oncologist. Let him know exactly how you feel about your interpretation of his response or lack of response/enthusiasm about you, your treatment and prognosis. (I just feel its like he thinks 'oh well.. she's stage 4... not much we can do' I want to aim to get to NED if I can but I feel like the Onc has given up on me already...)

No matter how busy he is or his office is, you are not just the next #number in line at the deli. Even if your doctor is the only onc in town, you need him to be totally devoted in your health care. You need to tell him so. If you don't feel comfortable telling him in person, put it in a Word document, print it and hand it to him, and have him read it to himself in front of you at your next visit. I had to do this once, and believe me it helped. You could even print your post or my post and hand that to him.

http://smileys.smileycentral.com/cat/36/36_18_3.gifI'm sorry to hear of your progression. Oh my, my heart goes out to you. My unprofessional opinion is that it is probably not a new progression, but a newly detected progression. Very disappointing, I know. I'm sure you know that there is no 100% accuracy guarantee with scans or any diagnostic tests we get. The areas you mention didn't grow overnight---most likely they were there before, either smaller or hidden and didn't get detected previously.

Here's my example, I had a CT scan that showed a spot, the next scan of the same area didn't show any spot, the third time the spot appeared again. When I questioned it, I was told that CT Scan picture slices are taken every so many increments and the spot may not have been where the scan slice was that second time.

A chemo buddy of mine---without going into much detail---is Stage 4 and has gone through Plan A, B, C, D, E, F, G, and ... and brain radiation, etc. http://smileys.smileycentral.com/cat/36/36_17_1.gifHer doctor is working very closely to give her every possible chance in her battle. Yes, she has gone through tremendous physical and mental up and downs, chemo not working, or working but with very bad reactions to drug, or severe side effects and not working, but she gave every plan/option a good try, not just one or two treatments. Finally on Plan G, she is showing signs of improvement.

Again, my heart goes out to you.
Sending my wishes and prayers
for comfort and calmness in your fight,
for your doctor to find the right treatment for you, and
for pure joy and fun with your babies every day.
Remember ---you're #1. You deserve the best care.


We love you and your beautiful bubbas and we are here for you!
Hugs,
Jo

I apologize if I have offended you with my boldness. I just want to you have the best possible care, even if you have to demand it.

Oh my gosh---your miracles---those bubbas are so beautiful! What blessings!

I wish you were closer too, so I could give you a big hug and cover those gorgeous babies with kisses. I agree with my sisters here that you need a doctor who will fight like H--- for you. I went to a lecture by a find oncologist about breast cancer mets and he described many drug combinations that oncologists try. I know that one will work for you. If your doc is the only game in town, I believe he should be willing to consult with the best cancer center in Australia on your behalf. Congrats also on your sobriety. I know it's the rock on which everything stands. May you live to be driven crazy by your grandchildren!!

Met with oncologist today
 

in person! and the outcome was good!

And I have to thank each and everyone of you who have shared with me here - every response means so much to me - Im sure you understand.

Your encouragement helped me to take the step and request an earlier appt. with Onc. to try and clarify some of these issues. Today was much more encouraging than the phone conversation!

He talked about continuing the Taxotere - at least for another 2 doses that I was due to have anyway - he said 'its too early to say it hasn't worked' ( when I told him he did say that he said - 'did I?' .....???) Anyways i'm glad it will continue as will the Herceptin... I'll have a follow-up CT scan after my next treatment.. and only cease the Herceptin or Taxotere if there is a clear sign of progression (or my MUGA score is not good).

He did talk about other chemo options and also Tykerb if Herceptin proves unworkable.. AND he said of course there are other options "it's early days yet"! So that left me more hopeful (thank You God and all you wonderful folks)

He did say the 'new' spots may have been there before and not have been picked up (like Jo-anne said). Also the changes in my hip are just consistent with the expected post-operative changes and the 'diffuse degenerative changes' in my back are indicative of arthritis!

So it is amazing what a difference a face-to-face conversation can make and I came away feeling so much more positive!

I said I know it can't be cured but I'm the sort of person who likes to know everything - like what the pathology/test reports actually mean and reasons for treatment changes - for me it all comes down to time with my bubbas - so I need to feel at least I am doing everything I can to be around for them.

Anyways hope what Ive said makes sense - he just explained things a lot better - which is just what I needed.

Thanks for being here for me friends - your support makes so much difference.

Sissy and Junior send their love to all their Aunties & Uncles.

Blessings
Hermiracles

Yes, I Am So Glad Your Dr. Visit Went Well And Has Given You New Hope And Confidence. Enjoy The Ba Bas.

Keep fighting you have my prayers that you find the right treatment to bring you to NED. Never give up hope! And your babies are truly beautiful!!

Glad the situation looks brighter for you dear Hermiracles. This is an up and down life, especially when dealing with BC. Right now your life should be all up with those sweet little ones. I have thought of you often, all the physical work the babies are, your surgery and radiation on your hip, the current chemo treatments with the side effects and fatigue, and the mental load about what lies in the future--whew! Hang in there brave sister and know we care for you and what is happening in your life.

Wow Hermi...your babies are absolutely beautiful and adorable!!! I also pray that you are guided in the right direction and you will be confident in the care you are getting. We are all there for you!!! Hang in there, do what you gotta do./....
Harrie

Glad to hear the good news. Seems all the oncologists are alike. My onco
has always talked slow, with calm voices, never gets too excited.

The girls are beautiful!!! Like everyone else, I believe you and your girls deserve better than a doctor that makes you feel like he's given up on you. I truly am very lucky to have doctors that really care about me, and beleive that everyone deserves a doctor that feels that way about them too. They are out there. I am glad the nurse listened, but is there another town near by that has another onc that you may consult with?? There is never a wrong time for a second opinion. I started taking Fasalodex this past year. I can only get it once a year (insurance) because I don't have bone mets. I get it for osteoporosis. If you can't change docs, maybe it's time for YOU to TELL your doc what you want instead of waiting for him to decide whats right for you. Good luck sweeetie - keep taking pictures of those beauties!!!!

I went to church today and I ask for you good health ...My friend ...

Hi,
I would humbly suggest that you do everything you can to get another opinion from another onc. however far away they may be. Hate to be presumptuous, but it sounds like your onc. isn't exactly responding as he/she should be. Keep on their backs-- sometimes that's the only way you get results.
Good luck.
Carol C.
p.s
Always a good question to ask...
if I were your wife , sister, mother etc. , what would YOU do????

Hermiracles, I'm sorry to hear about your bone tumors. Perhaps you should seek another opinion again and switch oncologists. If you visit a large oncological center for advice, a local oncologist can administer the chemo, so there's not need even to travel continuously sometimes. I get the feeling that you are in a small town that's not near a major center.

Your babies are adorable!!!

I'm praying for you. Joan