New mets!!..... already??!! - Page 2

Jeanette · 02-19-2008, 09:12 PM

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

Joanne S · 02-20-2008, 01:53 AM

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.

I'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.

Her 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!

MJo · 02-20-2008, 11:12 AM

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!!

hermiracles · 02-21-2008, 06:00 AM

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

RobinP · 02-21-2008, 07:29 AM

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

kareneg · 02-21-2008, 08:46 AM

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!!

Becca · 02-21-2008, 04:07 PM

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.

harrie · 02-23-2008, 08:17 PM

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

Jackie07 · 02-23-2008, 09:42 PM

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.

madubois63 · 02-23-2008, 09:52 PM

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!!!!

lilyecuadorian · 02-24-2008, 07:33 PM

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

Carol Carlson · 02-25-2008, 07:02 PM

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????

Joan M · 02-26-2008, 05:31 PM

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