Most of you have seen my posts and some of you have answered.I'm really unsettled about my situation.I have read many boards and asked many ppl for their opinion.I have failed 3 chemo's since Jan 07 for the mets in my supraclavicular nodes.Just recently kicked off of the sutent trial because of progression.The cancer remains in my neck nodes only.My options that the onc put in front of me are,gemzar/carbo combo witch are good for triple neg or to radiate both sides of my neck.Because the ca is in both sides it's systematic sp? So will rads be a good choice? It will clean up or debulk the ca in the nodes thats a good thing.It will not protect me from the rest of me!!Some say to only radiate if I'm having symptoms or pain,which I'm but what if the rads totally kill off the cancer,and I'm cancer free for awhile.By awhile,my onc said the cancer will  come back.It maybe a month or two or maybe a year or two.We have not tried rads for my mets yet so we don't even know if I will respond to rads.As for chemo we have tried and had little response.I had a chemo break of almost 3 months and had very little progression,we know that the older nodes are slow growing but now there are multiply little nodes and we don't know what they are going to do.I have heard many good stories about the use of gemzar/carbo but because I have had little response to the chemo's so far I don't know what to do.So please anyone with an opinion or with experience please,please chime in and let me hear what I need to hear.I just can't afford to make the wrong choice and with your help I'm confident I can make a decision I'm comfortable with.One minute I'm fine with having rads and the next I'm thinking chemo is better and then do the rads.I'm sorry if I sound so uneducated about this but I feel this choice needs to be explored to the fullest before I can make the right choice for me.Thank you all.........Dawn

Hi Zar,

    Hey we have talked many times before but its been awhile. I wish I had the answers for you, if you remember I'm trip +, so our situations are different, but with that I can tell you that I really had great success with Gemzar, after other chemos failing me. I didn't have it with anything else at the time except for Herceptin, which I know is not an option for you.  Have you asked the doc about the side effects of the rads to the neck area?? That may help with your decision some. I've only had my initial rads to the breast area, because with my lung mets there were too many spots to raditate. I would just worry about the effects on the throat area, with swallowing, you don't need more problems than you already have. Then again if its the best option, you may need to go that way. I'm really sorry you're having so many problems , and I wish I had the answers but please know that I will be thinking of you and praying for you. Hoping your decisions come easy for you... Hugs KLynn

Hi Dawn

I hope there are some more responses to your question. When I was faced with my decision, I couldn't find any responses to my question or any other postings about the superclavical nodes.  I only had the left side radiated but the nodes in the right side also disappeared around the same time as the left ones did.  I had minimal side effects, sore throat, pink skin in the radiated area.  I was warned about difficult swallowing but I was able to eat everything.  My oncologist encouraged me to do the radiation because it works faster than the chemo does.  She also would have liked me to had the mediastinal nodes radiated but because of the intense radiation given to the breast area in 2001, the radiation oncologist said that the skin would just break down.  So I would encourage you to speak to the radiation oncologist before making your decision and find out if you radiate the neck, if it can be re-radiated if the lymph nodes return.  It seemed to be important to my oncologist to stop the spread in the neck nodes quickly.  There are some important nerves that travel down your neck that affect your voice, eyes, breathing, heart & digestive system.  I have Horners syndrom now and very little voice.  My ENT doctor says that even with the cancer stopped in the nodes,for now, the healthy nerve tissue does not regenerate and scar tissue remains in it's place.  The radiation worked for me in terms of stopping the progression but since I also have other mets, I continue on my chemo.  The chemo they are suggesting for you will be available if you progress elsewhere but the radiation will stop the one place you have mets now.  Hope this helps.  Sometimes I feel woefully lacking in helping with advice since this journey is relatively new for me too.

Debbie

KLynn and Deb thank you for your responses.Deb you are a great help to me ty..........Dawn

I am not triple neg but am on Gemzar. I just started so I don't have much history to tell you. I thought rads were for pain control and to possibly shrink the tumors. If it helps you, I say do it!  

the rads I had on my back worked wonderfully but just in that stop. Once radiated, you can not have the spot radiated again.

Good luck!

Hi Zarowny,

I haven't read the other responses because i just wanted to jump in with my two cents.  Of course, as we know, there is no easy answer.

Here's what i think... Maybe you  could try the chemo first being closely monitored because this way you get the comfort of systemic treatment.  Then if there is response it will be seen in your nodes....then maybe the next step could be to do radiation if there is not complete resolution in the nodes.  The chemo can shrink the nodes then finish them off with rads, or it could just Kill the damn cancer all together!  It's such a tough decision...........i am so sorry you find yourself trying to make this decision.  The good thing about rads is that if you debulk and kill off all that cancer then there is a reduced chance of it spreading. 

I guess what i would weigh the side effects of the chemo into the equation too.  Gee i see your dilema, can you do both??  kind of like if you have a primary bc then do the chemo and the rads? 

so sorry hon, please let us know how it goes.....

Little Flower

Hi Zar,  I've been thinking about this and only you can make this decision.  However, I think if were me I'd go with the rads if the side effects aren't too bad.  Then you always have chemo if you need it.  Can they do the cyber knife type rads? 

Good Luck Dawn, I'm praying for you!

Love and Hugs,

Kasey

I'm so confused,is rads just for pain controll?I mean I know it kills ca cells but what the hell!!The rad onc told me that she could radiate and if in a year the ca comes back to the nodes she would radiate it again.I dont know..............

Zar, i just had to chime in again.

I had met a girl when i was diagnosed who had an intermammary node.  She started with her chemo, and shortly before she was done with her treatment (ER-/HER2+) she was diagnosed with mets.  She had responded to chemo because her intermammary node had shrunk but did not resolve completely.  This node was there for about 8 months before her mets were found.  I remember thinking to myself, i wish they had Radiated that damn node right up front because i saw it as a possible cause for systemic spread.  I want to say that GETTING RID OF THE CANCER the quickest way might be the way to go....if that's rads..then it's rads.  That chemo you mentioned will always be in your arsenal if you ever need it (God willing you never will)  Sorry for being so much on the fench but after typing my last post, i thought of my good friend who had a 'similar' situation in that she had one node that just wasn't responding to chemo.  find out if there are any ways to minimize side effects... any options with doses? 

Good luck, wishing you some peace of mind.

LittleFlower

I had several, clumped together, clavicle lymph nodes taken out.  This did nothing for the rest of my nodes, and if it did nothing else it made me feel better.

I was told, if there was only nodes in one area, I could have them radiated.  I so hope this would be the case because I would have jumped on the radiation, but it was not.

Either way, I would do it again the same way.  Of course, I will be having other treatments forever, but somehow, I feel better they took those out.

Good luck in your decison.

My best to all,

Diane

zar,

I am PMing you some articles.

celia 

Dawn --
Why can't you do both at the same time? When I was doing my rads, I met a woman who had been diagnosed with lung cancer. Her previous onc (at a local hospital) had given up on her, so she switched to this large teaching hospital. They were very aggressive and she did chemo and rads at the same time. Eight months later, and she is still NED!
Hugs,
Hillary

I am just thinking out loud now...if cancer would be in the liver, it could be radiated dispite it being systemic, right?

Why should that not apply to clavicle nodes? Same goes for lymph nodes in the axilla, they radiate those. Any cancer killed is good.

Even some lung mets or brain mets, though they are systemic.

So it would make sense to me to radiate yours too.

Hello Dawn,

  Sorry I have no answers for you as to what way to go, however, I do want to let you know I think of you often and you are on top of my prayer list. They always say, "go with your gut". Dawn I never had to experience  what you are going through, but I know you will come to a decision as to what to do and go for it. I wish you all the best luck  and a quick recovery. I hope you keep on hanging bat girl!!!! Miss and love you, Peggy

Bat girl still hangn but missn other bat girl so bad..........

Bat girl still hangn but missn other bat girl so bad..........

Zar,

I don't have any answers either, but just wanted you to know I'll hang with you.

Love,

Watson

Dawn,

I am thinking about you and feel like I somewhat know what you are going through. When the decisions are not straight forward, you may have to go with your guts at some point. You will know when that point comes. Our cases are completely different dx, tx etc all the way but here are some things I have to add in terms of info I have:

- Rads can be given to the same area again at a weaker strength. My rad. onc is currently radiating same spine area to reduce pain in my lumbar spine, which I didn't know can be done.

- If Rad onc knows that they might revisit an area, then they can plan how much they should give each time so they don't finish up all capability in one shot.

- Your rad onc already probably has thought and talked about this?

- If your onc. had thought that chemo should be done first, he would not have suggested rads. Is he thinking since your cancer is slow growing (as you mention about the chemo break and not much progression), taking some more time to recurperate from the chemo to gain strength while taking some action in killing cancer using rads, will be the best action at this time? I wonder if he would tell you if this is how he is offering the options. If so, what are the SEs that you are to worry about in case of rads since there is no palliative advantage to doing rads right now?

If none of this is helpful, I am sorry for adding to the confusion. You are in my prayers to find the most effective solution on your cancer with minimal SEs.

Gentle hugs.

-luckywife

Thank you all so very much for your advise and experiences......Dawn

I have been so worried about you.  I have thought about your options and personally I would go with the rads.  They have the benefit of possibly killing the cancer permanently at those sites.  Chemo can be a back up to the rads.  I found that it took 6-8 months to shake off all effects of chemo - would like to see you get another couple of months so you can endure the chemo as if it were your first.  Whatever you decide, is the right thing for you. 

I see the rad on on Thursday the 27 so hopefully will know more about what to expect.Thanks all...............Dawn

Nooooo!  Dawn, I was hoping that Sutent worked for you.

I'm a fellow triple neg, BRCA1.  My reaction is similar to LittleFlowers: get rid of the cancer asap any way you can.  Maybe you can do rads to get rid of the obvious tumors and then do Carbo/Gemzar to finish off the little cells & for re-assurance?

The only thing about head/neck rad is that I heard it could be a little tough.  Unlike rads to breast, armpit, back, pelvis, etc that generally only have skin side effects, rads to head/neck could affect your mouth, salivary glands, etc.  This info is actually from the people who have head/neck rads due to head/neck cancers, so I don't really know if they would aim the radiation to the same area if you have lymph node mets (e.g. from breast like your case).  Hopefully you'll find answers on your next appt.

If you do have to get chemo, I'm all for Carbo-containing regimen.  Carboplatin is the big gun for triple negative, and probably more so for triple negative BRCA1.

I hope your next treatment will eradicate the cancer for good!

Thanks PineHouse,nice to have your opinion and info on carbo.......Dawn

z,

good luck with the rad onc on thurs....thinking about you and waiting to hear how the appt goes and what decisions you make.

love and hugs,

c 

Ughh,decision day tomorrow and C I have not a list!! Will do my best to remember everything...........Dawn

z,  hmmmm.......sorry i saw this late.....

1. ask what is the difference between the carbo + gemzar, and the carbo + navelbine

2.  ask which first: chemo or rads

3.  ask can you do both, if necessary 

4.  ask what possible problems can happen from the rads

phooey..  that is all i can think of right now. i think there were more Q's but these are good ones.

GOOD LUCK!!!!! 

loveya,

c 

So,I went today,anxious as hell,to find out my rad onc was not there today!!!I saw a different rad onc,one who did not know my case or me at all.He said he read my chart and suggested doing rads on the left side clavical.As for the right he was concerned about previous rads but did say they could treat some of the nodes up higher on the neck but was unsure about the clavical area.He said I would have to wait and talk to my dr when she comes back next week.They did run me through the simulator and got pics of the neck and found the tats from previous rads.As to my next app I don't have one!! They have nothing and don't know when I will be called back.In the mean time the cancer is progressing in some of the nodes,I can feel this.So I sit and wait while the cancer keeps on growing!!! I have had a total of 31 tx in 4 months.There is a nerve in the neck the rad onc mentioned today that is of concern,radiation can damage it and cause my arm and shoulder to be numb forever.The right side of neck is the worse and it needs the rads but now who knows,I may not be able to treat all the spots needed.So maybe there is no reason to rads if we can't do it to all spots.My rad onc did not seem to concerned about previous rads when I talked to her in Dec,she even said if we radiate and a year later they pop back up we radiate again no problem....Mass confusion.Hope she calls soon.....Thanks......Dawn

Damn Zar,

Can't you just show up next week when she gets back and sit in the waiting room until they see you?  Waiting sux.

Watson

man o man....this is annoying to say the least.....I say, wait to make a decision until your rad onc gets back and you get to see her, as she KNOWS your case.  This rad onc does not know your case so he may be giving you more "stock" answers.

if it should turn out that you won't be able to get all the spots hit with the rads, then maybe do the chemo first and see if there are less spots after the chemo, so that the rads done then would be less extensive.

about not having an appt time, and i admit that i don't understand how they make appts in the Canadian system, but i would start calling everyday---your rad onc's office to get an appt (see if there are cancellations).  I would tell them that the rad onc you saw SAID he did not know your case and you NEED to be seen by YOUR rad onc who knows your case.  Also, can you call your regular onc's office and ask them for help in getting this rad onc appt---tell them you feel that your nodes are progressing.

I would think that rads would be still a good tx even if they can't reach all of the spots.  If the rads would knock out most of the spots, that would be less to deal with.  It all helps, doesn't it? 

next project is:~TO GET APPT WITH YOUR OWN RAD ONC!!!!!!!!!!!!!!!~~

loveya,

c 

Zarwony:

Isn't that the worst?  I had much more minor questions at my chemo appt 2 weeks ago and I also had another onc see me before the tx.  No matter what I asked him, all he said is that I'd have to wait to talk to my onc.  I wonder what the freaking point of seeing him was if all he did was say hi, ask how I was feeling and tell me to go to the tx room for my tx!!!!!  It really ticked me off.  But for you it was much worse.  I agree with "C" above, once your rad onc gets back, hound that office until someone gives you an appt... there is always room to put in one more patient... and your situation needs to be addressed ASAP.  Please let us know how you make out next week.  I truly believe the "squeaky wheel gets the grease".  Don't let them put you off. 

On a lighter note, by any chance, were you watching Sex and the City when Samantha got BC and couldn't get in to see the onc she wanted?  I thought I would die laughing when she asked the receptionist... "Who does a girl have to f%*ck to get a little chemo around here".  Let her be your guide (but exclude the potty language). 

Robin

Zarowny,

I have never posted on this board before but I saw your post and had to respond to you.  I am also BRAC1+.  Have you heard of the force board?  It is a website dedicated to BRAC1 and BRAC2 cancers.  YOu can find it at www.facingourrisk.org. I have found it very helpful.  I also wanted to let you know about a trial going on right now called the parp inhibitor trial.  It is showing alot of progress in BRAC + cancers.  I know that it is going on in the US but I am not sure about Canada.  IF there is a way for you to get to the States I think that this trial could really help you.  I know that I am a stranger but I am close to University of Pa hospital where I know that they are offering this trial.  You would be welcome in my home.  I also have a time share that I never use that I would be more than happy to let you use.  I know that I sound crazy but this could really be an option for you.  I don't want you to miss the oppurtunity because you can't afford to travel to the states.  I am also stage IV and I am only 35.  Us stage IV's have to stick together and look out for each other.  I wish you only the best of luck.

Stephanie