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-   -   Cancer is back...I just knew it. (https://her2support.org/vbulletin/showthread.php?t=41175)

ElaineM 09-24-2009 12:04 PM

Re: Cancer is back...I just knew it.
 
You seem to be doing a very good job of setting up the things you need and want.
Don't worry about your husband not being as supportive as you would like him to be. We women are strong and are very able to get important things done.
We are very good at finding help and support by ourselves when we need to do that.
I read Dr. Slamon is working with other doctor/scientists developing new drugs (targeted therapies) as part of the Stand Up to Cancer Project.
However, he might be willing to consult about your situation. In addition I wonder if making an appointment to see the breast cancer oncologist at the Johnson Comprehensive Cancer Center where Dr. Slamon works might be useful? You will get to see an oncologist who specializes in breast cancer. Dr. Slamon certainly influenced the way things are done at that facility.
Good luck. You are doing a good job putting one foot in front of the other. Keep going. Hang in there.
Feel free to share whatever you want to share with us.
Most of the members of this group have had alot of ups and downs with breast cancer and can be supportive whenever you want to discuss things with us.

Linda 09-24-2009 06:24 PM

Re: Cancer is back...I just knew it.
 
Chelee:
I'm so so sorry to hear about your recurrence.
I wanted to pass on the name of an LA bc expert that I consulted when I was dx. I know she's a heavy hitter, although I don't know if she's still at this practice, since I saw her 4 years ago. But you can google her and see where she is now and if she's someone you might want to consult.
Dr. Silvana Martino
(as of '05) The Angeles Clinic
(310) 582 7900
I wish you the best
Linda

Becky 09-24-2009 07:50 PM

Re: Cancer is back...I just knew it.
 
Dear Chelee

I am so sorry about this devastating news. Take a couple of deep breaths. Even though your onc hasn't been the greatest of personalities, she did state one fact - you will make it through this and it will be alright.

Please know I am here for you.

Love and hugs

charlotte 09-24-2009 10:03 PM

Re: Cancer is back...I just knew it.
 
I want you to know there is a great deal of folks praying for you (me too)We are here for you.. I don't post a lot, because I hardly ever get any good news to share..We care about you and I hope you can get some rest, before you start fighting this #******
Cancer. let me know if I can help you in any way..You are a strong person... take care, please keep us updated as to your progress.. Charlotte

vickie h 09-25-2009 07:54 PM

Re: Cancer is back...I just knew it.
 
Oh Chelee, @#$%^&%$#! I am so sorry to hear this latest news. I just found out as I have been away and dealing with my own stuff, but you are always here in my heart and prayers. Try to breathe deeply and know we all love you. Dr. Slamon is 2 blocks away from my Oncologist, on Santa Monica Blvd. in Santa Monica. Dr. Kimberly Hervitz is seeing his patients and he oversees all of the cases, so please call them and see if you can see Kimberly. You'll be in great hands there...I just know it. In the meantime, my sweet sister, I love you and know you're going to get the right treatment and soon.
Love and Hugs,
Vickie

loveher 09-26-2009 06:11 PM

Re: Cancer is back...I just knew it.
 
stay strong Chelee!!! you will get through this storm.
-Sue

sarah 09-27-2009 07:16 AM

Re: Cancer is back...I just knew it.
 
how you doing Cheleee???

juanita 09-27-2009 07:49 AM

Re: Cancer is back...I just knew it.
 
sending hugs and prayers your way!!!!

schoolteacher 09-27-2009 08:57 AM

Re: Cancer is back...I just knew it.
 
Chelee,

You are in my thoughts and prayers.

Amelia

Chelee 09-27-2009 02:03 PM

Re: Cancer is back...I just knew it.
 
Sarah you ask how I'm doing? I am just feeling so overwhelmed and have so many things going thur my mind of what I need to do...and how I'm going to get it done. Plus all the questions my onc won't answer. I know I won't feel any better at all till I talk to a "couple" other onc. One is Dr. Mortimer that Joe referred me too...hopefully they will get that set-up this week! They are already past the 72 hrs they had to get it done. I called the case manager at my place & her excuse for why it's not set-up already is because I saw a different onc at City of Hope within the last 18 months so that onc has to release me to see Dr. Mortimer. Well that shold NOT take this long...I'm in a hurry. (What about laws...it said 72 hrs...period!)

All these delays and just more added stress. Then I am a bit nervous about starting Herceptin tomorrow "without" a port...but yet I want to get started now. They keep saying Herceptin one time without a port won't damage my veins like other chemo. (I hope that's true...my veins are shot as is.) I get my port Tues., the day after Herceptin. Seems they did this backwards.

I did go on Saturday & had my ECHO...couldn't get a read on the tech to see if my heart is in good shape? Last time I did Herceptin my EF was always high...70% & I believe 65% was the lowest it went...so I hope its still fine. If I had my game plan I'd feel better I think? Trying to figure out which onc's to get opinions from...& being realisitic about how far I can drive back and forth for chemo is just stressing me out. So many things to think about AND do. I want to get at least a "Consult" with Dr. Slamon if at all possible..that would really give me some peace of mind. I've had such a great response from so many of you on the board and via PM with good idea's and referrals to great oncologist's to see. I'm over whelmed...in a good way. But yet it's hard to pick which ones to go too. I still have to call my HMO directly because the case manager at the hospital told me flat out I could NOT have more then one 2nd opinion. I find that HARD to believe. They just don't want me doing that. I'm just at my wits end about now. This entire last wk has been a nightmare to me. My appetite has been gone & I'm dropped weight & having trouble sleeping since this all started.

Until I get a 2nd opinion I won't know anything and I think thats whats causing me the most anxiety. Navelbine & Herceptin was mentioned...along with Taxotere, Tykerb or Avastin to add to the Herceptin (alone) of course. Or a clinical trial. I first need to know if I really have chest wall recurrance...my PET/CT doesn't sound like it to me...it's my seroma that's been there forever! But right axilla does suggest neoplasms. :( I want to know what they can do about that since I can't have rads? This waiting for 2nd opinions is going to kill me first. I'm just rambling like always...not to stressed out. Sorry!

Chelee

'lizbeth 09-27-2009 02:17 PM

Re: Cancer is back...I just knew it.
 
Chelee, I know you are understandably upset. But Herceptin is a targeted therapy not a chemotherapy. It won't damage your veins like chemo does.

You'll be okay with one treatment without a port, so don't worry about that one.

I hope that you get good news with your heart's LVEF. You deserve some good news and I'll be praying that you receive it.

We are here for you,

'lizbeth

harrie 09-27-2009 06:16 PM

Re: Cancer is back...I just knew it.
 
Chelee, I am so sorry to hear of your news.
Ok second opinions. I was going to get a second opinion from a Dr. David Chan. I believe he is in Redondo Beach. I really liked the book that he wrote. I ended up not seeing him and was referred to Dr. Pegram for the opinion that I wanted regarding the HER2. If it were not for that particular situation, I would have consulted Dr. Chan. I was very grateful to Dr. Chan's office for going out of their way to refer me to Dr. Pegram. They didn't have to do that and they never me me personally.
I go to Breastlink down in Manhattan Beach and there is a Dr. Waisman who is my onco. He is amazing. Not only is he very smart, but extremely compassionate and on the cutting edge. Let me know if you would like more info.
Dr. W is so on top of everything with me, if I have ANY concerns or questions, he is always available via email, any day of the week and he gets back with me with hardly any delay at all, dispite his busy itinerary. Unbelievable.
I have had my share of experiences with bc and Dr. W is my guardian angel.
Email me if you want more info.
Take care.

WolverineFan 09-27-2009 06:35 PM

Re: Cancer is back...I just knew it.
 
Chelee,

I can't imagine how frustrating it is having to wait, as that is always the hardest part for me, but you can do this. I agree that you will feel somewhat better once you have a game plan and can start on that. Until then, please know you have a big crowd cheering you on every step of the way, and praying for a complete recovery for you!! Take care and good luck tomorrow.

sarah 09-28-2009 03:24 AM

Re: Cancer is back...I just knew it.
 
glad to hear from you Chelee. Good that you're getting Herceptin right away. sounds like the board has given you good references.
If I were you, I'd go with Harriecanarie's advice. you need a very good doctor and a compassionate one.
once you start getting the chemo, you're feel better.
the waiting and deciding is the most worrying period.
hugs and love
sarah

DianneS 09-29-2009 09:24 PM

Re: Cancer is back...I just knew it.
 
Chelee,

Just wanted to chime in to say I had all my herceptin tx's with no port. They use a tiny pediatric needle - very painless and does not leave any marks.

Thinking of you & wishing you the best treatment ASAP!
Dianne

WolverineFan 09-30-2009 12:27 PM

Re: Cancer is back...I just knew it.
 
Chelee....any updates? You are in my thoughts and prayers.

Hayley

chrisy 10-01-2009 12:03 PM

Re: Cancer is back...I just knew it.
 
Chelee,

Sorry to hear your news...I know it's scary as you gather information there's just too many questions swirling around right now. Chelee you are a fighter and although I know it feels like you have to hit it all with guns blazing RIGHT NOW...but you do have time to get the best information, go for that 2nd or 3rd opinion, and come up with your plan.

The big difference now is that you are planning for a marathon, not a sprint. What has not changed is that you need to remember to breathe.

You're not alone.

agaperus 09-25-2010 05:11 AM

Re: Cancer is back...I just knew it.
 
Hi Rhonda;
I was reading through and saw in your medical information that your doctor prescribed neurotonin. Are you still on it and is it still helping? My doctor has put my on Lyrica and although it has helped a lot, the weight gain it has caused has my blood sugars climbing. I'd love to know if you are experiencing any side effects from the neurotonin. God bles and thank you.

Trish 09-25-2010 07:26 AM

Re: Cancer is back...I just knew it.
 
Oh Chelee I am so sorry you are feeling so bad. I am glad though that so many of us on this web site are right behind you. I am confused though. I thought Joe , the Webmaster was Joe Christine's husband who recently died. Was I wrong?
I am hoping that you will soon get better news.
Trish

KDR 09-25-2010 09:46 AM

Re: Cancer is back...I just knew it.
 
Sorry to read your upsetting news, Chelee. Stay strong, there are so many new and good treatments available now. I think UCLA is one of the best places, too. Warm thoughts your way,
your new friend, Karen


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