Need Help Please!!!

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zarowny9
zarowny9 Member Posts: 328
edited June 2014 in Stage IV/Metastatic Breast Cancer ONLY

Hi all,I have been off chemo for a month.I had progression in a supraclavicular node and they stoped all tx[xeloda/avastin] So I had a second opinon at a different ca center and the onc suggested different chemos and sent this info to my oncologist.I spoke to my onc today and he wants me to wait till Jan,there is a trial comming to the center using sutent and it targets tripple neg bc.Iam worried about being off chemo for this long.If I start chemo soon it will be gemzar and carbo but starting excludes me from trial.My onc is confedent that waiting another month wont cause alot of spread.I have 1 node at 2.3 cm and he said it is not life threatening,will it grow probably he said,will it spread he does not know.He strongly advises that I wait and do the sutent trial.Iam afraid if I wait I will be dealing with alot more ca in Jan.He said if it does spread we will tx it then.I have to make this choice with my family in mind and what if I make the wrong choice?Iam going crazy!!! I really em!!! I dont know why they cant give me something untill the trial starts? Please any advice would be appreciated....Dawn

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  • 2timer
    2timer Member Posts: 590
    edited November 2007

    Your doctor sounds like he has your best interests at heart.  I have a close friend who its stage 4 and she believes being in a trial offers better treatment than just standard treatment.  

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  • Kasey
    Kasey Member Posts: 695
    edited November 2007

    That's a hard choice to make.  I think if I were you, I would call the second opinion Onc and ask what he/she thinks. 

    Hugs,

    Kasey

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited November 2007

    You don't have a huge amount of cancer right now, I think I would wait and do the trial.  The people I have heard of in the sutent trials seem to be doing really well.  I know of lots of people with triple neg cancers that take chemo breaks with long remissions or little to no progression.  Good luck with your decision.

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  • luckywife
    luckywife Member Posts: 427
    edited December 2007

    Dawn,

    I wonder how your cancer has behaved in the past. Is it considered aggressive? You mentioned progression on previous treatment. Over what period has it progressed to 2.3cm? It has been a month or more probably since your last scans because you are off chemo for a month. Are tumor markers changed significantly in this period without treatment? That can be seen with blood test. Would your Onc. consider doing another scan now to see if things are stable or only slightly worsened in size with no spread? Good news from that may give you confidence in waiting for a month more when you can rid your body of accumulated toxicity and enjoy the holiday season a bit.

    Onc. can't promise anything about the behavior of the cancer cells but can do some tests to allow you to make an educated decision.

    Very best.

    -luckywife

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  • awjkej
    awjkej Member Posts: 133
    edited December 2007

    Hi Dawn,

    I agree with what everyone else has mentioned.  It does seem that your oncologist is looking out for your best interests, and I would talk with the 2nd oncologist and discuss this with him/her; ask the onc if you were their wife/sister/mother what would they recommend?  You may also want to talk with a 3rd oncologist. 

    I don't know much about sutent drug, or triple negative, but if the drug is getting good reports from others, it may be worth the wait to participate in the trial.

    Hugs while you make your decision.  I know how difficult it is to weigh all the parts invovled to decide. 

    Anne

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  • marlegal
    marlegal Member Posts: 2,264
    edited December 2007

    I think lucky's advice was great.  Do you find yourself really leaning one way more than the other Dawn?  So many of our decisions are emotional, but we have to accept them and trust and hope.  It sucks, it really really does.  Wish I had more wisdom.

    Love to you and the kids,

    Mary (marlegal)

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  • CalGal
    CalGal Member Posts: 469
    edited December 2007

    Hi Dawn -



    Good points already. Just want to add a few ...



    What phase is the study? Will everyone get sutent or will some get a more standard drug? Will you know or is it blind?



    CalGal

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    Hi,Thanks for the pointers,I have had 8mm of growth since sept,Iam a grade 3.We do not do tumor marker test here.CalGal, everyone will get the sutent plus another chemo,in my case it will most likely be gemzar or navelbine.I just want to know that this ca is not gone to spread in the 2 months off tx.........Dawn

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  • jonimb
    jonimb Member Posts: 900
    edited December 2007

    Hi Dawn,

    You know I'm here for you any time you need someone to talk to.  Was the Calgary onc concerned about waiting until January?  If not, then I think I would opt for the trial as they do keep a closer eye on you.

    The other thing is you'll be able to have a break from chemo over the holidays.

    Big hugs to you....Joni

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  • ForTheMoment
    ForTheMoment Member Posts: 375
    edited December 2007

    Hi Dawn-

    I agree with the others.  I took a month and a half off chemo and I have cancer in my liver and bones.  They gave me the time off to get over a cold,  travel, etc.  In the end, my cancer did grow, but a very small amount.  The doctors always tell me it will work just as well in a week as it will today (when I want to take a break)  Typically, if it works in one spot, it will work in another.  My doctors tend to lean towards taking breathers now and then as long as I feel physically ok, to let my body heal a bit.  So far..I've never regretted a chemo break, and the trial sounds exciting!  Go with your gut.. and your heart.  Either way, we are all here for you.


    Hugs, and best wishes..

    Erin

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  • celia088
    celia088 Member Posts: 2,570
    edited December 2007

    Dawn,

    Everyone here has given good advice. 

    I agree with asking the 2nd onc what his opinion would be about this choice you have to make, and how fast he thinks your cancer is growing.  You didn't mention in your post what chemos he suggested for you and i am wondering if one of those would happen with the trial?  It seems important to find out what he thinks of this situation.

    Did the 2nd onc mention Sutent?  I wonder what his opinion about the trial would be.

    Can you call 2nd onc and ask him about this choice you have to make?

    BTW, i went to www.bcmets.org and typed in the search box "bc in supraclavicular nodes" and I noticed that a bunch of people have posted about this.  I haven't clicked on them yet to read, but i will go back later.  This would be good for you to check also.

    Good luck with making this decision.  If you need to talk, don't hesitate to call!  

    as always, love and hugs,

    celia 

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  • ozzie2
    ozzie2 Member Posts: 1,271
    edited December 2007

    Dawn it wont hurt to wait till Jan...I would go on the trial ,while u are on a trial u will have the best of treatment and care..Lots of Oncs give breathers...so I say go with what u feel your heart and head are saying...thinking of u and good luck with what u decide..

    hugs

    oz

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    Hi all,so a bit of an update,the sutent trial is not as I stated above,I will either get sutent or another standard chemo.My scans are booked for Jan 18 and I will see the onc on the 31,Iam not gone to get chemo till Feb sometime!!!That is 3 months no chemo!!!This can not be a good thing,I agree with a chemo break of 1 month but 3 freakin months???My cancer is growing that is why they stoped my tx.I dont know what to do!!!The onc said my cancer is localised and is minimal and cant warrant chemo if its not growing faster or spreading.I said lets be aggressive,why wait and watch.What the hell are we waiting for??

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  • PineHouse
    PineHouse Member Posts: 416
    edited December 2007

    Hi Dawn/Zarowny9,

    I just wanted to point something out.  Some of the Sutent trials disqualify you if you have had Avastin (anti-angiogenesis).  So if you do decide to wait for the 3 months, make sure that you will absolutelly be eligible.  Double check again with your oncologists.  It'll suck if you wait 3 months and then find out you can't get on it.

    Also, you may want to check PARP Inhibitor trials.  There is a phase II trial of BSI-201 for triple negatives.  There is also a phase II trial for BRCA1/2 (the ICEBERG1 trial).

    Good luck and wish you well!

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    PineHouse,they are revising the trial,so I was told,and if thats the case then I do qualify according to my onc.The parp is not in trial in canada or I would be all over it.Thanks for your advice.Iam toren as to what to do.....

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    Iam crawling out of my skin!!!!3 months no chemo,Iam in a bad spot and have no where to go.............................Dawn

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  • BLESSED4
    BLESSED4 Member Posts: 109
    edited December 2007

    Keep your head up Zar I know you are having a hard time. People take time off from chemo all the time. Enjoy the time off you have. Try not to dwell on it. I wished we lived closer so I could help keep your mnd off of it. I know what a struggle that could be. I am just a phone call away. Hang in there girl. The only way your gonna get through it is take control of your thoughts. God Bless you.

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited December 2007

    Dawn,

    Did you get my PM?  Are you doing ok?

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    Hi, I did get your pm,Thanks very much.Iam not doing ok,I hate this.I hate not knowing what is right or wrong.And 3 months off chemo is so scarey to me........Dawn

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  • debstitchestoo
    debstitchestoo Member Posts: 155
    edited December 2007

    Hey Dawn

    Your oncologists would not recommend waiting for the trial if the cancer was so agressive that it would put your life in danger in the next couple of months.  You need to invite positive thoughts into your mind, take a few deep breaths and trust your doctors.  I'm reaching out and sending you a cyber hug along with positive vibes.  Try to relax and enjoy the holiday season.  Pm me if you need more positive messages.

    Debbie

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  • shend
    shend Member Posts: 109
    edited December 2007

    Hi Dawn,

    I think the three months is long. Did you talk to your doctor how to watch you in the three months? Is you tumour marker reflect your progression? if yes, at least check tumour marker every three months, if they go up, should take action. Everyone is different, for my own experience, I only had on spot on my spine for 1.5 years, then since May 07 to Oct.7, failed two drugs in a row and the mets to my head to knee all over my bones, plus liver. It is very aggressive. My tumour marker just jumped in those months. Since Oct, I started chemo Taxol+ Avastin.

    Please make sure you are watched carefully in the three months. My doc told me the same things "your met  is  very localized", but turned as wild fire.

    Take care

    Shen

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    Thanks Deb for the positive thoughts,Shen you just scared the hell out of me,I will have no follow up till end of Jan..........

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited December 2007

    Dawn,

    I just looked to see your receptor status and you are a triple negative.  That is a good thing in this case, triple negative is usually a less aggressive, slower growing cancer and the three months might not be such a bad thing.  I didn't realize you were in Canada, how does it work for you to get a 2nd opinion?  I know waiting is hard, but if the drug looks good it might be worth it.  Have you done any research into the trial he wants to put you in?  Has it been doing well in terms of results?  Also, since you only have mets in the nodes, is it possible to remove the nodes and eliminate all the cancer from your body?  I am just trying to think of options for you.  Not knowing how your medical system works makes it hard for me to think of other suggestions.  If you need to talk, PM me your phone number and I will give you a call.  I have free long distance in the US and Canada.

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  • BLESSED4
    BLESSED4 Member Posts: 109
    edited December 2007

    Dawn,

     January is not that long. Everyone is different and we don't know what the outcome will be no matter what. There are people that are on chemo and it spreads anyway. There are some that do nothing and it is stable. If you dwell on it and nothing happens thats time wasted worrying. If it does happen that doesn't mean chemo won't control it. Regardless no one knows. Stay positive try to keep your mind off of it. You have a tx plan and all you need is to keep your hope and your faith that everything will work out. Worrying about it is not going to change anything but make you crazy. Sending positive thoughts your way! 

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  • shend
    shend Member Posts: 109
    edited December 2007

    Hi Dawn,

    Please don't be scared. Everyone is a different case. But we must protect ourself and put our best interesting in our mind whenwe make decision. It is tough one.

    Shen

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    It's my understanding that triple neg is more agressive......I don't know????

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  • celia088
    celia088 Member Posts: 2,570
    edited December 2007

    z,

    I have given this some thought, and i am trying to put it in a logical context for you. 

    Now that you have found out about the update on the trial (Sutent/OR/another chemo), it seems that you would only have a 50% chance of getting Sutent in the trial.  You also have a 50% chance in the trial of getting one of the chemos that you could actually be getting right now instead of waiting until the trial starts.  It is likely (I think, but i don't know for sure)  that Sutent will become approved and available for you in the future.  You could do some research about it and also ask your onc if/when he thinks it will be approved as a bc treatment.

    With your high anxiety level, it might be a better idea for you to NOT go with the trial, and to start a new chemo now and see if it does the job.  Sutent could still be a possibility for you down the road, if necessary.  Dawn, the unknown factor of not knowing if your nodes will progress in the waiting for the trial to start, may be too much for you to deal with.  That is not a good way to live, with that kind of stress.  Perhaps it is a better solution to get chemo now and not do the trial.  Besides, it isn't even definite that you qualify for this trial.  Too many unknowns in this situation.  I think if it were me, knowing all of these unknowns, i would get chemo now and skip the trial.  At least you would know that you did what your instinct is telling you to do.

    Also, i don't think that there is a "wrong" answer with this. Either way you choose to go is a positive step.

    Call or PM if you want or need.

    love and hugs,

    c 

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited December 2007

    Dawn,

    Keep smiling!  Concentrate on your upcoming vacation while waiting for everything to fall into place.  Your scans are scheduled and anything that might want to try and set up a new unwelcome home will be blasted out of sight!!!!

    Take Care!

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  • karol61
    karol61 Member Posts: 128
    edited December 2007

    Dawn,

    Waiting is awful and I am truly sorry that you have to wait. I am sending prayers and positive thoughts to you,dear. 

    Karoline 

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  • zarowny9
    zarowny9 Member Posts: 328
    edited December 2007

    Hi,I met with the radiation onc today and she said we can radiate the nodes.So,there is another option out there.I have to determine what the best tx is for me.Wait and do the trial and if that dont work do the rads or do the rads and hope they knock the mets out and do follow up care.The chemo onc said that even with rads that the ca would come back somewhere so he advises chemo.The rads onc said what I all ready knew that the rads would kill any cells in the area of radiation leaving the rest of me unprotected.....hummmm.........Dawn

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