It's back...

[Chelee]

Monday I found out my cancer returned to my rt axilla. Had a nice 3 month chemo break...but now I'm thinking I should of hit it harder with Taxotere.

So far it's only in that same one node in rt axilla and no where else that we know of? (With exception of the one stable bone met on ilium.) Also my CA27.29 has been very reliable for me and they are only 15 right now which is good. So I will be going back down to UCLA tomorrow to see Dr. Hurvitz. She works closely with Dr. Slamon as most of you here probably know. I heard she has a couple trials in mind for me & I'm sure one is TDM-1...since that is what Dr. Slamon talked to me about on prior appts.

Seems it might have been a good idea the 1st time I recurred to axilla to have the one node surgically removed...then mop it up with chemo? (Although there is risk of lymphedema.) Now that the same node has recurred for a 2nd time...wouldn't that be a good option to just have it removed & biopsied? I realize I can ask this tomorrow...but was looking to hear first hand from anyone else here that might of had that done?

Chelee

[ElaineM]

I am so sorry to hear it is back. However, I know you will come out swinging and do battle with the cancer once again. I think you are doing the right thing by seeing Dr. Hurvitz or Dr. Slamon. Take good care of yourself and hang in there. I already know you will keep putting one foot in front of the other no matter what.

[Laurel]

I am so sorry the beast in back in that node, Chelee. I am not well versed on what to do when nodes are malignant, but it seems to me that taking that one out makes sense. I will be watching to see what some of the more experienced & knowledgeable members think. Good luck tomorrow. Please let us know what you discover. You are fortunate to be able to be in Dr. Slamon's care.

[Cal-Gal]

Chelee,
so sorry to hear about this--but I know you will bounce back!!!
Hugs and Prayers

[jellybean]

I am very sorry to hear this. I would consider having it removed, but I am not a doctor. I know someone locally who had a recurrence in a node (not sure if it was in the axilla) and she had it removed followed by radiation. She has mets as well, but everything else is stable.

[Jackie07]

Chelee,

Sorry for the recurrence.

But you sounded so 'cool'! I'm sure the 'sucker' will be scared away by your coolness and soon be detroyed by the 'weapon of mass destruction' used by your doctors.

Sending good vibes your way.

[Faith in Him]

Ugh! I wish it would just leave you alone.

I have a friend in the same situation. Her onc is leaving the node alone (no surgery) and putting her in a trial. I'm not sure which one. I hope you have a very successful meeting tomorrow with the docs and are back to NED soon.

Tonya

[swimangel72]

Chelee - I'm so sorry you're having to deal with this again. I hope your doctor will be able to answer your question about removing the node.......seems like a logical step to me. May God's angels watch over you!

[Rich66]

How's the leg? Are you getting around ok?

[Chelee]

Thanks to all of you for the feedback/support. It means alot to me. Sometimes it seems once stage IV they don't like to take the surgical approach? But I am going to ask about that tomorrow. It's frustrating to have just one darn node misbehave & put a damper my summer. (But it will be sorry when I'm done!) ;)

Rich, As to the leg...it's pretty good these days. The only pain I have in femur is due to the 10 days of radiation. (Rads is suppose to get rid of pain...not cause it.) But I get around rather well now thankfully. (No cane or walkers at present.)

Chelee

[sassy]

Chelee,

So not fair that you are having to deal with this again, but I know you will prevail. Keeping you in my thoughts and prayers.

[Becky]

Chelee

I am not sure whether biopsy would be necessary again however, every treatment received could change things in theory. Ask the onc today. It would be super nice if you could get into the TDM-1 trial (with or without pertuzimab). Its just that the toxicity differences versus chemo is so different. That would be a great choice.

Keep the faith girlfriend. I will be thinking about you.

[tricia keegan]

Sorry you have this annoying node again Chelee, if they dont want to remove it maybe they could radiate it??

[Pam P]

Chelee - Sorry to hear of this new recurrance. I trust you'll get good advice for best treatment when you see the onc. Hang in there - you'll conquer this too. Pam

[lexigirl]

Oh Chelee, I am sorry. I am hopeful that whatever decision is made to get rid of the cancerous node will be the right one. Stupid cancer!

Hugs,
Lexi

[jml]

Chelee~
So sorry to hear the news. But you've got the guidance of a great onc to help you beat this back again. And you will.
I had a couple of supraclav nodes that recurred after gemzar, so the 2nd time around I had 7 weeks of rads. All clear there ever since.
I hope you have to the opportunity to enroll in a TDM1 trial.
This drug holds a lot of hope for all of us.

Keep the Faith~

Jessica

[chrisy]

Sorry to hear it's sneaking back...but as my doctor has said to me in the past "it's just a little bit of disease". They're so funny:)

This is why it's a marathon not a sprint.

But you have the very top people on your team, you are in good hands.

[krisvell]

Chelee, Best of luck with your Drs appointment. Wow; you have the rock star of Oncologists. You are in the best of hands. I hope it goes well. I am routing for you to return to NED.
Kris....

[bejuce]

Hi Chelee,

I'm sorry to hear about your recurrence, but glad you'll be seeing Dr. Hurvitz. I met her last month at a DoD peer review panel in DC and I was very impressed with her. I talked to her at length at dinner one night and she was very upbeat and positive about all the trials they have going on at UCLA. She told me that the cure rate for stage IV patients keeps going up and up. And she offered to put me on Dr. Slamon's schedule to see him this month or the next and discuss with him my future treatment plan. I loved her!

So, yes, Chelee, as the others above have said, keep the faith! We're all here cheering and praying for you.

Marcia

[Lori R]

Cheelee,
I am glad you had a break from chemo but hate to hear that you are facing "life interrupted". The bad news just starts off a flurry of appointments and decision making.

Wow!!! What encouraging news from Marcia. Talk about rubbing elbows with the big guys. With all of the input from Jessica and others, there are so many options.

Praying for you during your decision process. Please keep us posted.

Lori

[Jean]

Chelle,
Have not been posting much - but always thinking of you.

Hated to read your news.....:(
But I do know that you are now under the best care with Dr. S and his group. So much good news on the TDM1 trial, and Dr. S. advised that from the start.
Sending you much love and warm hugs your way.

Jean

[Sherryg683]

Chelee, I am so sorry you are going through this. I am glad to see that you will finally have some of the best doctors on your side. I know the problems you have had in the past. I was ready to come down there and whip them for you. You'll get this under control girl, you've been through a lot worse than this and you're still kickin....luv ya..sherry

[sarah]

Hello Chelee,
Damn it coming back! What did the onc say? and how do you feel about what they suggested? Was surgery or radiation discussed? You are definitely in the best hands anyone could wish for so that alone should make you confident and comfortable.
Let us know.
Health and Happiness
Big hug and love
sarah

[StephN]

Dear Chelee -
Well shoot. Hopefully the Navelbine has shut down any other mini-leasions and this darn node is the main offender.

As for that node, I know that Sheila had a node by her neck removed, but she still had other disease. Maybe you can contact her.

I have another friend here who had a node above her collarbone removed as well. It had been a recurring one like Sheila's.

Maybe radiation is a better route, if you want to treat it by itself, then move to systemic?

Hope the good doctor had a plan for you.

[Lien]

Damn, Chelee, that's not what we wanted to happen, isn't it? So let's hope your doc and you can beat this thing asap.

I wouldn't worry too much about lymphedema. I had 3 nodes removed and never had problems with that. I think reducing the tumor load is usually a good idea.

Sending lots of hugs from overseas,

Jacqueline

[Chelee]

I met with Dr. Hurvitz and she is just like Marcia described her...positive and upbeat. She has one trial she spoke to me about which is a randomized , muliticenter, phase III trial with TDM-1 VS Capecitabine + Lapatinib. My main interest is TDM-1...I really don't want to do Tykerb/Xeloda.

I realize it's a 50/50 chance of getting the TDM-1...but I'd hate to wait and go thru this whole process and end up with Tykerb/Xeloda. I was surprised I was offered this trial because Dr. Slamon told me at a prior visit he did not want me on chemo. But she explained that the TDM-1 trials are over and this is now phase III. They now want to see which combo works better for women with MBC. I was hoping to discuss other options since my recurrence is only in the one node...but her main interest is the trial which she is very excited about. I hate all the decisions we have to make regarding trt options. (Mentally it's exhausted.) Speaking for myself of course. lol

Chelee

[jellybean]

Chelee,

Good luck with your decision. What did your doctor say about surgically removing the lymph node?

JB

[Chelee]

JB,
My onc said removing the node is one possibility but a big risk for lymphedema. Since my onc knew I was going out to UCLA...she said ask Dr. Slamon about it. I did get to ask Dr. Hurvitz and she also said there is risk for lymphedema. Then followed-up by saying I should leave it there because it would be a good way to moniter if my trt is working.
If I sign onto the trial it's for two yrs...although I can drop out any time. I just want to make sure I weigh all my options and currently I don't feel I have enough information to make that decision.


Chelee

[Midwest Alice]

HeyChelee, Just wanted you to know I'm thinking about you. ALice

[Jackie07]

Chelee,

I vote for entering the trial. Both treatment options are good ones. And if TDM-1 shows big advantage, they might stop the trial and give everyone TDM-1. It's quite possible since it's already a PhaseIII and TDM-1 has been showing good results.

As for the node - I don't know how big it is or anything. But I think Lymphedema is something can be managed. I've been wearing my compression sleeve and glove daily (supposed to wear them at least 8 hours a day) after I contracted cellulitis. It's not bad at all. I was fitted for my 2nd pair just 10 days ago. And the lady told me the new ones can be washed in the washer. (I've been handwashing mine every night.)

But it's true that it can be a good gauge if you leave it while undergoing treatment.

I just thought that you should go for the trial. Just my own opinion.

[Chelee]

Jackie, Thanks for your input because I have no support other then my Her2 sisters...so I really appreciate it. I wish they could promise me TDM-1...but they can't. If they hand me pills I will know which arm I'm in and could drop out I suppose.

I'd still like to talk to a breast surgeon about removing this node. Find out exactly where it's located in there since not one of the onc's I've seen can find or feel it? The node is 1.5 x 2.4 cm. Decisions, decisions...

Chelee

[Margerie]

Whose node is it anyway?? I am sorry there are so many decisions... it must be hard. Hang in there Chelee, will be thinking of you and wishing you strength!

[Chelee]

Margerie, I'm not sure who's node it is...but if you know anyone that wants it just let me know. lol I still haven't made a decision...things keep changing. Everything I was told about the trial has changed. I was told they would accept all the scans I just had...but now I'm told I have to do all of them down there. (I just had two PET/CTs in the last 3 months...why another one)

I was also told there is a 21 day washout period so I have to go off Herceptin/Zometa/Femara. Makes me nervous to be off these drugs...especially Herceptin. I've only been on the Femara 13 days...it hasn't even had a chance to work yet. I will be very disappointed to go thru all this just to be put in the arm with Xeloda/Tykerb. I can get that combo right at my centre without having the washout period. The fun never stops in cancerland.

Chelee

[jellybean]

Chelee,

Sorry you are going through this. If you progress on Xeloda/Tykerb, will the trial let you have T-DM1? That could be a benefit for you of joining the trial. Also, if you have a three week dose of Herceptin, then you wouldn't be losing anything during the three week washout period. (Maybe I don't understand the timing of the washout. Perhaps it goes 6 weeks out from when you had the infusion.)

Best,


JB

[Chelee]

JB, The washout period of 21 days is ok for Herceptin as you said...but the coordinator said depending on how things go there could be some delays getting started. What adds a bit of anxiety for me is it's already been a bit over 2 wks since my PET scan that showed a recurrence. So I'm anxious to get started on something. All these 2nd opinions and appts seem to take so much time when I'm worried about progression. Then adding another 21 days on top of all of it seems like a long time.

There was no mention if I could switch to T-DM1 if I progressed on Xeloda/Tykerb? But that is a great question...I will call tomorrow and find out. Thanks for bringing that up!
Chelee

[sarah]

Hello,
Try to relax, anxiety is not good for this disease. I agree with the others, get into the trial and should you end up in the wrong arm and not feel comfortable, you can always tell them, I'm going to drop out because I'm not comfortable with this choice and listen to what they say and you may well get into the one you want so don't worry about that until you know. Assume you'll get into the T-DM1.
Good luck, waiting is the tough part but you are so lucky to have the very top people in the field looking after you.
hugs and love
sarah

[Sheila]

Chelee...I hated to read about the recurrance...but wanted to let you know that after I had the node removed in 2003, more came back, and they refuse to remove again, they also said easier to monitor by feeling, without so many CT's.

As far as the axillary node, i had one show up while on Tykerb/Herceptin, and it enlarged even while on the Avastin, to the point that i could feel it when I put my arm against my side....after 2 rounds of the Metronomic chemo combo, the node is not even palpable...so again, a good way to track the effectiveness of this treatment...of course I have to get a CT anyway, as I have lots of other nodes misbehaving!!!
You are in my prayers and heart that you will get the TDM-1, and let it do its number on that stubborn cancer!!! Keep Strong!

[Chelee]

Sheila, Thanks for taking the time to reply...especially when I know how full your plate is right now. Your so kind. The onc I just went to told me the same thing you did...leaving the node is a good way to moniter trt.
After you had the node removed...how long was it before the another nodes popped back up? If I thought I could get a good yr out of it I would go for it versus starting chemo right now. Since this is a marathon as they all say...and my CA27.29 is so low (15) I was hoping to get lucky enough to maintain a while on herceptin/Zometa/Femara alone. (I just started the Femara and have hopes maybe it will shrink that node?) (I think I stopped the Navy Beans too soon.) But started having lung issues and was on oxygen.

I did find a TDM1 trial which guarantees me the drug...however I found out I would not qualify for it since I haven't had Adria.
I just wished they would get TDM1 out so anyone that needs it could have it. If anyone has had Cyberknife to just one node in axilla pls reply. (Or PM.)

Chelee

[StephN]

Chelee -
There is a Compassionate Use location for T-DM1 open in Highland, CA. I don't know where that is, but I am hoping it is not too far for you to check it out.

You are in my prayers as you grapple with this new decision.

[Chelee]

Hi Steph, Yes Highland, CA is one of them I called about. They have two T-DM1 trials here in CA. The man at Genentech told me they both require that I have had AC. He went over all my history...I've only had a Taxane. So I'm excluded from those two darn it. I appreciate you telling me just in case I would of missed it.

Chelee

[Joan M]

Chelee,

Sorry to hear about the node. But good luck with your decision. It's a tough one. And I'll keep my fingers crossed that you'll get the T-DM1.

Joan

[Chelee]

Joan, I have decided to pass on this trial. I was really only interested in T-DM1 if I had to drive that far wkly. (2 hrs one way) I also found out there is no cross over to T-DM1 if I were to get the Tykerb/Xeloda arm and progress. I also don't like the idea that I will be off Herceptin if I get the Tykerb/Xeloda arm. (My CA27.29 dropped when I started back on Herceptin.)

Now I don't know what to do? I still have lots of questions and no answers? I was hoping when I was out at UCLA I could cover all my options but there just didn't seem to be enough time. It was mainly about the trial and what was involved in it. My onc is going to ask me what I want to do and I haven't a clue? Maybe Tykerb/Herceptin like Dr. Slamon mentioned to me at a prior appt...I just don't know? If anyone has any idea's I'd love to hear them...might help me brainstorm this a bit. CA27.29 was still in NED range...so low measurable disease so far.

(I've had so many distractions...one very ill dog and my MIL fell and broke her hip. Trying to take care of everyone & myself...when it rains it pours.)

Chelee

[JustMe]

Chelee - I wish I had some words of wisdom for you, but unfortunately I don't. I will keep you in my thoughts and prayers though. And please, keep us posted.

[Darlene Denise]

Cheele: Tykerb/Herceptin and if it doesn't show strong results soon, add Xeloda to the mix?

I'm not sure from your siggy where mets are. Just the axilla now?

Hope you find your way on to an effective treatment.

Stay strong...Darlene

[Julie2]

Cheele,

Tykerb and Herceptin is not a bad option when disease is not that big. In addition to that I think it is better to get the axilla lymph node removed. You don't need to run out of options just to take care of that one node.

Julie

[Chelee]

Darlene, Yes, it is just the rt axilla at present...nothing new seen. (Bone met to left ilium is still stable.) Since this is the 2nd time for that one pesky node...I've like to just have it removed. But I've heard its good to leave it in to moniter the affects of trt. I've heard pro and con on this? In a perfect world I'd like to think I could have it removed and maintain a long time on Herceptin/Zometa/Femara. (I can dream right. ) :)

Chelee

[Darlene Denise]

Chelee: I'm not down with let's just keep it for monitoring reasons. Shit, isn't that what scans are for? How about Cyberknife for that pesky node? It can potentially treat tumors anywhere in the body. If not, I'm with you on cutting that sucker out and maintaining your dream treatment.

Yes, girlfriend continue to dream. It's the least you should get to do while dealing with all of this.

Let us know how it goes....Darlene

[Chelee]

Darlene, What I find interesting is the different answers I get when I ask about removing the node...or leaving it there? It depends on who I ask and what treatment they are offering me.

If it's clinical trial then it's a good way to moniter trt--and for a trial I'm sure that is very true. But I did call a place that does Cyberknife and they said I was the "perfect" canidate for this and wanted me to come in for a consult asap. Then if I ask my surgeon he says yes it is a very real option to consider. If I had several nodes popping up causing a problem I wouldn't even consider it...but it's just this one every time. (So far anyway.) I wish all these doctors I talk to were on the same page...but each one says something different. (But I will continue my dreams and fantasties...that's one thing they can't take away from me.) :)

Chelee

[Darlene Denise]

Sweet Chelee: What it comes to is, choose a treatment that makes you the most comfortable. I have found that this disease has many options and a lot of gray ground. The recommendations we get are often influenced by what that doctor has at his disposal and his philosophy. Sure doesn't mean that is the best choice for you. I have learned to cast a big net to pull in all resources to make the best decision for me. No one doctor can know everything. Like you, I travel to thought leaders and use everyone's info before making MY decision.

Sometimes being proactive empowers me and gives me courage, other times it scares me and wears me down. That's why I value this forum and strong women like yourself to help keep going in the right direction.

Good luck on this and I hope to hear a success story on getting rid of that pain in the ass node. When I dream, it's not about treatment, it seems to be about my dreamy neurosurgeon!!! I guess that's good medicine too!!

Your metsister....Darlene

[mmoons]

Chelee,

I just wanted you to know that I was thinking about you. I hate it that you got this crappy news. And I especially hate it that you have to make all these decisions. It is a cruel form of torture.

Sending you my warmest thoughts and prayers.

Maureen

[ElaineM]

I am thinking of you too. Get all the information you need to make those important decisions. That is right. One doctor doesn't know everything, no matter how educated or experienced they are. Just like other people doctors have different interests, philosophies, and experience with patients. Sometimes we also have to twist some arms to get what we know we need.
Good luck. Hang in there. Keep putting one foot in front of the other.

[vlcarr]

Chelee,

Just wanted you to know I'm thinking of you.

[ammebarb]

I'm thinking of you too. Gentle hugs, as you consider options.

Barb A.

[caya]

Hi Chelee,

Just chiming in here to let you know I am also thinking about you as you weigh your different treatment options.

all the best
caya

[Barbara2]

Behind with reading the posts. Sorry to hear you are searching for answers to tough questions. Praying for good decisions and answers for you.