Scanxiety Confirmed, Progression Shown

[Sheila]

I havent posted, but was taken off Tykerb a few days ago...,my CT's 3 weeks ago showed progression, which was obvious to me in my armpit, neck and chest...losing my voice again and coughing which they felt was the neck nodes on the vocal cords...another round of CT's yesterday showed progression even more pronounced in the past 3 weeks, with a mass now encasing and causing obstruction to the left Pulmonary artery and left bronchus, which explains the coughing and shortness of breath. I have also dropped almost 10 pounds in the past 6 weeks. They plan on adding Avastin next week (waiting for approval) to the Herceptin since I did well before on it except for the B/P issues and the nosebleeds....I really felt like the Tykerb/Herceptin was the magic bullet for me....and might have been if I hadn't had to wait and fight for 2 months to get it. I am really bummed over this news...trying so hard to stay positive, but getting so tired of this roller coaster. At this point I feel as though I need a hat trick!
Keep me in your prayers!

[mmoons]

Oh Sheila....that stinks! I am so sorry you didn't get better news.

Everytime I see one of your kind, supportive posts for others I always think of how beautiful you are in your picture. Clearly you are as beautiful inside as out - the way you are always "there" for all of us.

Sending you lots of prayers for the fortitude to keep kicking this cancer.

Hugs,
Maureen

[Ellie F]

Oh Sheila
So sorry to hear this news. What about T-DM1? Would this be an option still?? Thinking about you. Please remember you have got on top of this before and you will again.
Love Ellie

[Jackie07]

Sheila,

Sorry for the set back. We'll pray that you get Avastin soon and cut off the blood supply of those cancer cells - choke them to death.

Meanwhile, please rest well and get ready for the next battle - we are all behind you.

[Bill]

I'm sorry to hear this, Sheila. You will be in my prayers and I hope the Avastin is approved quickly and does the trick. You keep in touch. "Don't make me come up there!" Love, Bill

[WomanofSteel]

Sheila, Sheila, I am so very sorry. I know how frustrating this is. It seems like we have almost exactly the same issues. I just started on tykerb, xeloda. Hopefully it'll do something for me. I hope this little avastin tweek does it for you. Hang in there honey!

[Carolyns]

Dear Sheila,

I am sorry to hear your news. I know that it is so tough to hang on during the down portions of this roller coaster ride... but when the news is new ... that it when I usually feel it as the lowest point. I guess we have to feel these lows because they are real and then get back up and lace up our gloves to go another round. I know I personally had to go buy a new Coach hand bag (to replace the $26 dollar bag I have been toting around for the last year or so) after I got a plan.

I wish there was something we could do for each other to take away the pain of these let downs. A magic wand or some fairy dust.... Thinking of you and praying for you.

Carolyn

[Midwest Alice]

Hi Sheila, I am so sorry to hear this news. Keep strong the Avasin next week will get you back to kicking it. I am thinking of you and praying for the Avasin to do the trick.

Hugs my friend, Alice

[Mary Jo]

Dear Sheila....I am so sorry to hear this. You have my prayers....most definitely and pray that Avastin is approved quickly for you.

The roller coaster of emotions has to be so hard to deal with. Please know I care......and I pray God's Peace to hold you at this time.

Love and gentle hugs...

Mary Jo

[chrisy]

Sheila,
You already know what my one-word reaction was. I forgot, Brenda would have put it on a - - - -stick.

Yes, you did well on the Avastin, you stopped it for a break, not because it failed. So it may still be able to pack a wallop for you.

I think at this point your insurance co should have learned who they are messin' with, so hopefully that will go smoothly.

Otherwise, Bill might come up there.

Hang in there, my friend.
Chris

[whatz]

Well $@$*!)(*$_! for lack of better words. I know how you feel about tiring of the rollercoaster but hej, don't give up on it! You've come too far. Keeping you in my prayers!

[Becky]

Oh Sheila. Maybe adding something to the Tykerb/Herceptin might do the job too. I am thinking all about you.

[sassy]

Sheila, I'm so sorry you are having to deal with this plus the added issues of insurance. Please know I will keep you in my thoughts and prayers.

[vlcarr]

Dear Sheila,

I'm so sorry to hear this. Your posts always bring me hope. I haven't been on the board that long but I know you are one tough cookie and you will fight this like the warrior you are.

I will be keeping you in my thoughts & prayers.

Sending warm fuzzies,
Vicky

[Barbara H.]

Hi Sheila,
I am so sorry to hear this. You were so helpful to me. Perhaps Avastin will work at least long enough until T-DM1 gets approved. Also, there are new trials coming out with targeted therapies. You might qualify since you have measurable disease. Please know that you are in my thoughts.
Barbara H.

[caya]

Sorry to hear this Sheila - no wonder you feel exhausted. Hopefully the Avastin will be the magic bullet for you...

Keep fighting valiant warrior woman!!

(and eat some chocolate, it's good for you!)

all the best
caya

[ElaineM]

I am sorry to read your news. Please keep pushing the docs, insurance company and whoever else you need to push to get the Avastin and whatever else might help.
I hope you get something to help you with the symptoms until you get the medicines you need. Take good care of yourself and keep putting one foot in front of the other.

[StephN]

Well, girlfriend, you know how I feel about this news. I know you were trying to spare us without adding to the other tough-to-take news we have been experiencing. As well as waiting for the new scans to tell the new story.

Hard to figure why the Tykerb did not do better. Would your onc be able to get Neratinib for you? Seems like the Avastin could knock down the tumors and pave the way for some new treatments. That will be my new mantra.

{{Big hugs to you.}}

[Chelee]

Shelia, Things started out so good for you on this combo...I can only imagine how your feeling about now. But gosh darn it all...I'm so sorry you have to deal with this. I will be praying that this leads you into a better direction. Weren't you on a wait list for TDM1? I hope that is a real possiblity...or as Steph mentioned, seeing if you could get on Neratinib trial. I feel so bad for you...it's been one fight after another for you. It seriously makes me angry that you have to deal with this. But I will continue to keep you in my thoughts and prayers that something will work it's magic. Sending you lots of positive energy and love your way.

Chelee

[Mary Anne in TX]

Sheila, you have my prayers and love for your upcoming battle. I am very sorry that you must take up yet another fight. I'm believing BIG for quick and positive results for your treatment. Much love to you, ma

[Lori R]

Dear Sheila,
I am so sorry that you have to regroup. I believe it was Carolyn who pointed out that hearing the news might be the low point in the darned roller coaster ride. (someone let us off!!! We've had enough fun now.)

We both know that you are up for another loop...so.....acknowledge the sadness, take a deep breath, gather your wits for another round.

REMEMBER!!!! there are a lot more options. Try the Avastin as it served you well in the past, if that doesn't work can you go another round with a taxane? Abraxane worked well for me. And of course, our silver bullet TDM-1 which I thought Joe posted something about compassionate use.

We know that you never take NO for an answer. Please keep up the good work. If you need anything from us...let us know....Lots of energy coming your way...Lori

[michka]

Dear Sheila. I am so sorry that Tykerb did not work very long. I just feel like punching all these insurance guys in the nose. Why such delays? First there was this horrible Tykerb story and now you have to wait for Abraxane. It worked for you before so I hope it will wipe all these bad cells out again. And maybe a combo would be best but others know more than me about possible options.The only thing I can do is send you hugs and tell you I am thinking of you. A lot. Michka

[karen z]

Sheila,
I sent you a pm and am also thinking about you a lot.
I am sorry that you are having to go through this- stay your very very strong self!

[ammebarb]

Oh Shiela, I'm so sorry you've had progression and hope that the Avastin does good things for you. Physical symptoms can surely be the pits, but for me, the mental and emotional were just as hard---so I'm praying for good results with Avastin and Herceptin, but also for your state of mind. How I wish that magic words could make it all better! I am thinking about you and keeping you in my prayers.

Barb A.

[Lien]

Shit! I'm sorry, but that's the word that comes to mind. This just SUX!

Ofcourse you feel upset, scared, tired, disappointed and all the other emotions going through you right now.

Let's hope Avastin will do it's thing for you. I'm sending good thoughts, healing energy, calming waves and lots, lots of great big hugs your way. Just hang in there!

Love

Jacqueline

[chicagoetc]

Sheila,

Drat. What a letdown. I'm praying too for relief via the Avastin or whatever else becomes obvious. Will be in touch re lunch...

Melanie

[Snootch]

Sheila - I'm so upset by this news it's hard to write this, BUT keep fighting and keep your hope bright. My sincere wish for you is that all the wonderful, angelic support you have provided so many here will come back to you NOW and see you through to health again. You are in my thoughts and prayers, please keep us posted. - Luca

[tricia keegan]

Sheila, keeping you in my thoughts and hoping your onc find that hat trick:)

[Patb]

No!!! After you fought so hard and long to get this
combo. Maybe they will speed up the next treatment
and it will knock it back and since you are aware of HBP
can be prepared for that. YOu are in my prayers and
hopes that all will be well. God bless.
patb

[lizm100]

Sheila-
so sorry for what you're going through. I'll definitely say extra prayers for you. Hang in there I'm sure there are more options.

Sending (((hugs))) and prayers your way.

[Ceesun]

Sheila, Darn....sending prayers for good options to come your way. Ceesun ( I am on the same combo for now )

[Rich66]

If you can swing it, seems prudent to keep up the Her2 blockade. I can't remember the access to TDM1 issues. You could add Xeloda in at a lower, continuous, metronomic dose. Same for Cyclophosphamide. Xeloda and Gemzar seem good in pretreated patients. Gemzar and Abraxane too. Weekly seems best. Docetaxel is still there too. If you have an easy spot to needle biopsy, might be a good time to see what's what. You may be ER+ after extended Her2 therapy. That would open up that whole side of things. I've even read high dose antiestrogens can have effect on technically ER negative patients. Ramping gradually up to 20mg Melatonin at night would likely help. Mainline some green or white Tea or get some capsules. Heard only good things about that. Same with Milk thistle.

[Faith in Him]

Shelia,

Progression is so hard to deal with. I am so sorry you are going through this but I believe the right combo is out there for you. I thought you were pursuing the TDM1 trial. Is that a possiblity?

[v-ness]

dear sheila - i can't imagine how you must feel getting this news but i just wanted to say you are in my thoughts. i hope for the best for you. valerie

[Gerri]

Oh Shelia, I am so sorry that Tykerb/Herceptin did not work for you. Please know that I am thinking about you and hope you can start on your new plan of attack without delay.

Hang in there and please keep us posted.

[Pam P]

I am so angry reading this news. I'd hoped the tykerb herceptin combo would be a good one for you for a long time. You & I were on avastin about the same time I think. The nosebleeds & bp issues at least were manageable. I hope this will shrink those da*&#@ tumors down & gone again. I'm wondering too about the t-dm1 possibility for you now. I'm sending you all kinds of prayers and good thoughts for you right now. Pam

[kimber]

I am praying for you Sheila! You can and will get this under control again. I can't even begin to imagine the roller coaster ride that you have been on. We need you around here woman! You are not going anywhere!!

Much love to you -
kim

[Ruth]

Oh Sheila ~ I am so sorry! You have been such a rock of support for everyone here. I'm praying for you.
Ruth

[krisvell]

Hi Sheila, I am sending positive thoughts and prayers your way for that Hat Trick... You've had good success in the past and it will work again.

As an aside, I just want to thank you for all the posts you do. I feel very grounded thanks to the information that you share on this site. You are one of the folks on this site that have given me great strength to deal with this.

Sending Hugs and Prayers your way.
Kris....

[Emelie B]

Hi Sheila,
I have taken so much comfort in seeing your beautiful, smiling face each time I checked in. Don't despair. Take a breath and let us all send you love and luck.
Hang in there and know that no matter what, we are standing beside you in your fight.

[Laurel]

Sheila,

I am so sad that the Tykerb/Herceptin was not the one-two punch you needed. I am not as versed on this as many of the others on the site, but couldn't something be ADDED to the combo before giving up on it? Don't suppose you can do T/H/ and Avastin? Just thinking out loud here because I so want you to knock that evil crap back to hell where it came from.

You hang in there, Hon.

[Jean]

Sheila,
This is just rotten news....simply put.
Knowing you - you will gather up your strength and fight back even harder. Love you and keeping you in my prayers....you are my hero gal.

Big strong hug
Jean

[Rich66]

Ok..because I opened my trap on this earlier and folks might think I'm off my rocker (which I am):

Int J Oncol. 2003 Aug;23(2):369-80.
Induction of antiproliferation and apoptosis in estrogen receptor negative MDA-231 human breast cancer cells by mifepristone and 4-hydroxytamoxifen combination therapy: a role for TGFbeta1.

Liang Y (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Liang%20Y%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract), Hou M (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Hou%20M%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract), Kallab AM (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Kallab%20AM%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract), Barrett JT (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Barrett%20JT%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract), El Etreby F (http://www.ncbi.nlm.nih.gov/pubmed?term=%22El%20Etreby%20F%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract), Schoenlein PV (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Schoenlein%20PV%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract).
Department of Surgery, Medical College of Georgia, Augusta, GA, USA.
Mifepristone (MIF) is an antiprogestin with potent anti-glucocorticoid and anti-androgen activity. MIF also appears to have anti-tumor activity independent of its ability to bind to nuclear receptors. In this study, we tested the ability of MIF to inhibit the growth of ER and PR negative breast cancer cells. In addition, because high-dose anti-estrogen treatment has been shown to inhibit ER and PR negative breast cancer cells, we compared the anti-proliferative activity of MIF to that of the anti-estrogen 4-hydroxytamoxifen (TAM) or combination hormonal therapy (MIF + TAM). MIF and TAM therapy induced a significant time- and dose-dependent growth inhibition and, ultimately, induced cell death in MDA-231 cells as evidenced by increased DNA fragmentation, cytochrome c release from the mitochondria, and the activation of caspase-3. The anti-proliferative activity of TAM plus MIF combination treatment was at least additive as compared to either monotherapy. The earliest indicator of TAM and MIF cytostatic and cytotoxic action on MDA-231 cells was a significant (p<0.05) induction of TGFbeta1 secretion into the growth medium within 4 h of treatment. Secreted TGFbeta1 levels at 24 and 48 h were significantly higher in the TAM plus MIF treatment group as compared to cells treated with TAM or MIF alone. TGFbeta1 neutralizing antibody or addition of mannose-6-phosphate (M6P), a reagent also used to inhibit TGFbeta1, significantly attenuated the TAM and/or MIF-induced cell growth inhibition and cell death. In summary, our results indicate that MIF used in combination with TAM can effectively kill estrogen-insensitive human breast cancer cells. Our study further implies that agents that effectively increase TGFbeta1 levels in ER negative breast cancer cells may be one treatment approach for hormone-independent breast cancers.

PMID: 12851686 [PubMed - indexed for MEDLINE]

[Catherine]

Dear Sheila,

I was really bummed to read your news. But really happy to see your cute face and the request for a hat trick. Well it looks like Dr. Bill may have referenced a chemical hat trick. Of course, I do not know what that study means. However, I am going to pray that the doctors mix up a love potion for you that will give you what you need. We are all behind you and want to help you anyway we can.

All the best, Catherine

[Shobha]

Dear Sheila,

Very sorry to hear your news. Adding my prayers that the next combo works miracles and put you back on the path of NED!!

Hugs,
shobha

[Sheila]

A quick update and thank you for all your support and information...the Avastin is approved, and I will begin tomorrow, so far no other agent. My muga last Thursday showed a major drop of 15 points, and now below 50....dont know if it was because I had it 2 days after my 3 week herceptin, the combo of the Tykerb/Herceptin, or the mass of lymph nodes in my chest pressing on my pulmonary artery...now I have to see a cardiologist...I asked about surgery or radiation, and was told i could get a consult, but it was probably a no....and now with Avastin, the surgery would be a no.
Just wish they were adding a chemo in...this has been a very trying week as my Dad was life flighted to a major heart institute in Illinois Saturday after suffering a heart attack...he had angioplasty and is doing amazing....he is so worried about me which makes all of this even harder.....so, cardiologist appt this week, Avastin tomorrow at 7am in Chicago...get the kleenex, let the nosebleeds begin....trying to stay focused and positive.

[schoolteacher]

Shelia,

Thanks for posting and letting us know what is going on. Glad they approved the medicine. Sorry to hear about your dad. You are in my prayers and thoughts.

Amelia

[WolverineFan]

Shelia,

I haven't been on the board in a few days and was very sad to log on and read your news. I am so sorry for you. Please know your faithful friends here are keeping you in their thoughts and are praying for you.