Verdict is: Good Bad and Ugly

[Sheila]

After 2 days of tests, scopes etc, the verdict is in. My hoarseness is due to a paralyzed vocal cord, which the CT confirmed. The paralyzed vocal cord and coughing is due to irritation of the nerve leading to the vocal cord, caused by the lymph nodes in my neck enlarging and pressing on the nerve....kinda like the hip bones connected to the knee bone, the knee bones connected......I have enlargement in the supraclavicular nodes, the mediastinal nodes, and a conglomeration of nodes in the aorticopulmonary window. This would be the bad. On the good side, the precarinal, subcarinal and hilar nodes have shrunk and show necrosis as have the left axillary nodes. This I guess would be the good. They also noted a 3mm cyst on my left hepatic lobe...to small to characterize.
The ugly is that I DO NOT qualify for the phase 3 trials of T-DM1, due to previous treatment with Xeloda. I am always a day late and a dollar short in the chemo world.
The new plan is Navelbine and Herceptin, every 2 weeks...she mentioned Doxil, but wasnt willing to forego the Herceptin and refused to give both together.
I will begin the new regime in 2 weeks, so just Herceptin again yesterday. The hope are that the nodes will shrink and my voice will return to normal...if all else fails, surgical intervention is an option. Thank you all for your encouragement and prayers....this has not come at a good time (as if there ever is a good time) with my Mom still having issues...she had 3 units of blood in the past 2 days...I feel as though I am being tested big time with all of this.
Tomorrow will be a much better day.
Thank you for always being there for me and everyone else!
By the way, I have an new friend on the pond behind my house...a egret comes to visit every day...such grace and beauty!

[chrisy]

Sheila, my gosh you have big shoulders. I thought they were shoulder pads...

You forgot the beautiful - or I guess that was the egret picture. The bird was nice, but I think it stops by to remind you of YOUR grace and beauty.

Glad that you have a new plan...keep hanging in there, my friend
Chris

[Ceesun]

Oh Sheila I am sorry about this and am pulling for you. Please keep us informed. Ceesun

[Believe51]

Sheila Girl, I guess your title does say it all, talk about mixed emotions. I am happy that there is an attack plan ready for the rest of these nasties. This post came at the perfect time for me, it is Wednesday night and I will revise the thoughts and prayers I shall say for you just in time for our prayer session. Those which I say for you always includes that beautiful family and especially Mom. How are you doing emotionally and spiritually, I wonder about that. Now if you will excuse me, I have some serious meditating to do. I love you.>>Believe51

PS: I am only telling you this because I do not think you would get offended. Remember that I do have glaucoma and the eyes are not the same...'kay?.....Before I started reading your post, I thought the feathered friend was a reference describing how that hoarseness felt. This is why I should maybe "Always Believe" and think about "Never Assume"..(smile)

[Mary Anne in TX]

I agree with Chris....I think egret stops by to remind you just who you truly are.
Sheila, you have stopped by for so many of us so often to remind us of the "good stuff" in our life! Thank you for all those times and words of love and wisdom.
I add you to my special list for prayers and the Angel's Touch of healing. I've always thought that it was the Navelbine & Herceptin that finally put me on the road to NED. Won't ever know, but I so hope it's the midas touch for you!
Luv, ma

[Carolyns]

Sheila,

I love your picture!!! I am sorry to hear that you need to switch treatments but I believe that Navelbine will get you to a better place. I also missed out on the T-DM1 trial. Since I have already had Navelbine, the next trial I would try to get in is the Heat Shock Protein trial.

Navelbine sounds like a good option as most find it fairly easy chemo. I needed to drink smooth moves tea - preventatively - to keep things going. I learned this the hard way. I also had some kind of stomach coating meds with Navelbine.

I am sending prayers your way. You are such an amazing image of hope to me. Your grace and kindness comes through every post you make.

Love, Hope, Peace, Carolyn

[chicagoetc]

Ok, I found two of the node areas online. [I guess nurses have to learn all these???] Maybe the others around these somewhere... Melanie

http://upload.wikimedia.org/wikipedi...de_regions.jpg

[WomanofSteel]

Sheila, I am sorry that you are having so many issues. I am glad that they found some answers though and that you are on your way to getting some new treatment. I really think that with all we have to deal with that we should get an automatic reprieve from the everday dramas in our life. Unfortunately, it is not up to me. I understand what you are going through though and anytime you need to vent I am here. I am keeping my fingers crossed that the navelbine works for you!

[Rich66]

How far along is Phase III TDM1? Can the combo be given off protocol?

[Rich66]

Did you mention this to your onc?:
Bicarbonate increases tumor pH and inhibits spontaneous metastases.

Robey IF, Baggett BK, Kirkpatrick ND, Roe DJ, Dosescu J, Sloane BF, Hashim AI, Morse DL, Raghunand N, Gatenby RA, Gillies RJ.
Arizona Cancer Center, University of Arizona, Tucson, Arizona, USA.
The external pH of solid tumors is acidic as a consequence of increased metabolism of glucose and poor perfusion. Acid pH has been shown to stimulate tumor cell invasion and metastasis in vitro and in cells before tail vein injection in vivo. The present study investigates whether inhibition of this tumor acidity will reduce the incidence of in vivo metastases. Here, we show that oral NaHCO(3) selectively increased the pH of tumors and reduced the formation of spontaneous metastases in mouse models of metastatic breast cancer. This treatment regimen was shown to significantly increase the extracellular pH, but not the intracellular pH, of tumors by (31)P magnetic resonance spectroscopy and the export of acid from growing tumors by fluorescence microscopy of tumors grown in window chambers. NaHCO(3) therapy also reduced the rate of lymph node involvement, yet did not affect the levels of circulating tumor cells, suggesting that reduced organ metastases were not due to increased intravasation. In contrast, NaHCO(3) therapy significantly reduced the formation of hepatic metastases following intrasplenic injection, suggesting that it did inhibit extravasation and colonization. In tail vein injections of alternative cancer models, bicarbonate had mixed results, inhibiting the formation of metastases from PC3M prostate cancer cells, but not those of B16 melanoma. Although the mechanism of this therapy is not known with certainty, low pH was shown to increase the release of active cathepsin B, an important matrix remodeling protease.

[Gerri]

Shelia,

I am pulling for you along with everyone else. I really hope this new combo will be the one! Take good care of yourself.

[Joan M]

Sheila,

I'm glad to hear the good news about the nodes that are necrotizing but sorry about the bad news of other nodes that have popped up.

Is it possible first to remove them surgically and then continue chemo? I think removing them, if possible, would make it easier for the chemo to do its job.

In general oncs are anti-surgery. They seem to see it as the last option. I've had three local procedures now, and an onc I consult with at a major institution said that I keep having "these radical, localized treatments."

I've been keeping my eye on the T-DM1 trial as I'm sure many of the women on the board have, and my feeling is that every time they open another one, they up the ante. That is, at first the qualificatians were really broad and now they're being narrowed down to more specifically see when and where the drug works. But that disqualifies a lot of women who might really benefit from the drug.

Also, I could be incorrect, but I thought that it was okay to give Doxil with Herceptin, that trials have shown there is no increased toxicity to the heart.

Praying for tomorrow to be a much better day for you.

Hugs,

Joan

[Rich66]

"In general oncs are anti-surgery"
Ha! After dealing with a multitude of parental ills and corresponding docs...I've begun to think each specialist has a little difficulty looking oustide their domain for answers. I suppose it's somewhat natural. I guess it's up to patients and advocates to put it all together

[StephN]

Our Dear Sheila -

You have gone from one stubborn node to many. Kind of like those weeds that send shoots underground and then pop up at various intervals. Wish there was a weed killer like "Roots and All" for your nodes. I will pray that you get the kind of good results that I did with the Navelbine and Herceptin. At least your hair can kind of grow back in.

There was talk of compassionate use of the T-DM1 drug at Denver. Joe knows about that.

That Egret is a stunning bird. Let it bring you good wishes from the universe.

[jml]

Sheila~
Ugh! I'm so sorry those nasty nodes are acting so inconsistently. I'm so glad you've seen a good response in the subcarinal nodes, etc. The others are soon to follow!
I had disease in my supraclav nodes too - 1st time we treated with Gemzar/Herceptin, but they recurred 6 mos after finishing. So the next time we radiated them. It was my 1st experience with Rads- (I've been Stage IV since my primary dx, so to that point it had been chemo only).The rads resolved the supraclav nodes nicely & have been NED there since October, but sternal nodes popped up.
Gemzar/Herceptin seemed to work for a bit, but stopped somwhere midcycle. I'll see my doctor today - in an hour, actually - to make some decisions about the next treatment.
Is rads an option for you? If even to zap the supraclav nodes & reduce the tumor load?

I'm hoping & praying for a good plan to fall into place for you & even better response.

Keep the Faith~

Jessica

[hermiracles]

Dear Sheila ~ you are an inspiration that when the going gets tough the tough keep going!!! At least there's some good news mixed in there!

Beautiful bird! Also an inspiration ~ just like you!

Blessings sister
Hermiracles

[RobinP]

Dear Sheila,

Sorry, I have not been on the boards for awhile, but I was sorry to hear of more uphill battles for you. I will be praying for you. You've always been there for so many of us, thank you and God bless.

[Colleens_Husband]

Sheila:

I am sorry to hear about your latest setback. I am praying that you will have strength to kick cancer in the backside and I am praying for wisdom from your doctors.

Sheila, please know that you are not alone. We are with you and we always will be by your side.

Lee

[runtolive]

the xeloda should not have been a limiting factor.. its usually given in combo with tykerb..

their is a new tdm1 trial with pertuzumab phase1-2 starting in may.. ask your onc about this trial.

[Shobha]

Sending lots of prayers and postive thoughts your way, Shiela.

hugs,
shobha