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Comments

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    Placid no one can tell you why one person will get mets and not another, it truly is just one of those things. For most women doing all the treatments recommended is enough to keep them free from a recurrence or mets but for some reason that the scientists at the moment cannot say, a few will develop further disease. Hoping you are one of the many.



    Love n hugs. Chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    New2bc having a hysterectomy is your decision but I can tell you there is another way of suppressing your ovaries to lower your estrogen. Many women have a drug called Lupron which effectively stops the ovaries from working which also stops the need for further major surgery.



    I know the thought of chemo and radiation is truly frightening but really if your onc recommends this treatment it is best to do what is recommended.



    To my knowledge all cancer is sneaky no matter what type you have.



    Hoping you have a smooth journey.



    Love n hugs. Chrissy

  • carpe_diem
    carpe_diem Member Posts: 599
    edited January 2013

    placid,

    The overall recurrence rates are about 20-30%, which is enough to be worried about, but since your cancer is triple negative with high ki 67, you'll want to do everything you can to keep it in check.  In addition to what your doctors suggest, there is good research thet diet and exercise can help.  You can find info in the nutrition section of breastcancer.org and a site I've found helpful is www.aicr.org/reduce-your-cancer-risk/ (American Institute for Cancer Research) which also has yummy recipes.  Yes, women in great shape get bc too, but while you're improving your chances you'll also feel better and help control side effects from treatment.

  • taylor3131
    taylor3131 Member Posts: 1
    edited January 2013

    My DIL was on Xeloda for about 18 months - the last 6 months we saw a  steady rise in her marker numbers from 120 to right at 400.  On November 30 she started Navelbine - 3 weeks on 1 week off.  Her numbers are not going down & the  last scan showed progression to 2 spots in her spine.  The onc said he is going to go 3 more months on the Navelbine and retest. 

    I guess my question is - can it take a while for the Navelbine to "kick in".  I guess I just had my hopes up so high that we were going to see a reduction in the numbers and I really didn't expect to see any progression in the scan.

    I am so thankful that you provide a space for Family members to ask questions. 

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    Taylor it's not unusual for a drug to take a little while to show results. It's always hard to see progression when you are hoping for none but take heart, I'm sure your DILs onc is keeping a close eye on things.



    Love n hugs. Chrissy

  • Chewy1976
    Chewy1976 Member Posts: 3
    edited January 2013

    Hi Everyone - I'm new to this post.

    So I'm finally through the bulk of treatment for IDC starting at 34 years old (double mastectomy with 3 nodes positive, chemo - ACT, radiation, herceptin, and currently taking Tamoxifen for 5 years) and chemo shut down my ovaries.  This was great news since my cancer was ER+.  Unfortunately, my body has recovered and my doc suggested trying Lupron in addition to Tamoxifen to shut down my ovaries.  My problem is that the side effects from the first shot of Lupron are really bad for me - dizziness, nausea, bone/joint pain, extreme fatigue, crazy making insomnia, terrible nightmares - along with the usual hot flashes of menopause. 

    Has anyone else tried Lupron and not been able to handle the side effects? 

    Does it get better after the first shot or is the same each time you get the shot?  Or worse?

    Did you decide to try another medication or have your ovaries removed or just let the Tamoxifen take care of whatever estrogen eating cancer cells floating around your body?

    My dilema is quality of life (which is currently terrible) versus risk of recurrence.  I have two young kids (ages 2 and 5) that I am trying to do everything to reduce risk of recurrence so that I can be here with them as long as possible.  But right now I feel so terrible that I can't be the kind of mom I want to be to them.  I don't know what to do.  Any advice please?

  • BirdyRobin
    BirdyRobin Member Posts: 17
    edited January 2013

    Q: Also, if you have a local recurrance does it automatically mean your stage 4?

    Robin



    P. S. Chewy? I am sorry I do not have an answer for you.



    (((((hug))))))

  • Chewy1976
    Chewy1976 Member Posts: 3
    edited January 2013

    Hi Robin,

    My understanding of Stage 4 is that it's when your cancer has spread from the initial site that it was diagnosed.  I don't think it's stage 4 if you have a local recurrence but I'm not the professional.

    -Chewy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    Chewy I'm sorry I've not used Lupron so can't tell you anything about it. There is a lot of information available in the main area of BCO on all the drugs used for BC that will I'm sure tell you what SEs you can expect. Also, if you use the search tool at the top of the each page you will find other topics talking about Lupron and what others have done to help with the SEs.



    Hope this helps.



    Robin if the recurrence is in the breast area it is classified as just that, a recurrence. Metastatic disease is when the cancer has moved either to one of the organs or bones. Hope this answers you question.



    Love n hugs to both of you. Chrissy

  • BirdyRobin
    BirdyRobin Member Posts: 17
    edited January 2013

    Chewy, thanks hun any info is appreciated. Robin

  • barsco1963
    barsco1963 Member Posts: 879
    edited January 2013

    Chewy - I have not tried Lupron, but do take an injection of Zoladex every 3 months (along with tamo) to shut down the ovaries. Not sure if this is an option for you or if the SEs would be different for you. I don't have many SEs other than some joint pain. Might be worth asking about.

    Good luck - I hope that you find some answers and can have a better quality of life soon.

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited January 2013

    Just an update on my mom's ongoing saga to figuring out if she has mets. She did biopsy #3 a couple weeks back and a CT last week. Her onc appt. is this Friday and since he was pretty sure it was mets she will get her treatment plan on Friday, unless by some miracle her CT is clear and the first cottage hospital messed ups. Not likely. I was still holding out some hope that it wasn't mets until today when she showed me a new lump on her sternum that has just come up in the last 2 or 3 days :( The first CT done middle of November only showed 3 lesions on her clavicle, illiac bone, and sacrum. It worries me even more that in the last 3+ months something new seems to have grown. My worry was confirming it was mets, now I worry that there's more going on than just 3 bone mets. Will let you know what the onc says on Friday. Prayers always welcome.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2013

    Thanks for the update Canadagirl. Friday will be here very soon and you will finally get some of the answers you have been seeking.



    Hope they are not as bad as you think.



    Love n hugs. Chrissy

  • Moiralf
    Moiralf Member Posts: 119
    edited January 2013

    Canadagirl,

    I have been thinking about you and your mum and wondering if she had had those scans and biopsies done. It has taken them a very long time to get to this point and I truly hope that on Friday you both get some answers. No more mucking around. If he doesn't have a final answer I suggest throwing yourself on the floor of his office and having a tantrum. You will feel better for it and he will know not to do this again.

    Moira

  • suebak
    suebak Member Posts: 31
    edited January 2013

    Thank you ladies for your quick responses to my question.  I am having blood work done tomorrow, then will see my PCP next week.  He keeps an eye on my tumor markers.  My MO does not do them and I just feel more confortable having them done.  My PCP is great. He agreed to check my tm, if it will put my mind at ease.  I know they are not very accurate, My PCP said if we feel the need to do further testing, he will make sure they are done. 

    Thank you again.  You ladies are wonderful.

    Sue

  • Chewy1976
    Chewy1976 Member Posts: 3
    edited January 2013

    Thanks Barsco for the reply.  Zoladex might be an option for me, I will definitely look into that.  I know that Lupron and Zoladex do the same thing - ovary suppression - but I wonder what the difference is or if there is any between them.  Another good question to ask the doc next week.  If I would have known how much time I was going to spend researching and becoming an expert in all things breast cancer, I might have actually decided to go to school and get a degree for it!!!

    Hope everyone has a good day.

    -Chewy

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited February 2013

    It's official -- bone mets to clavicle, T5 and I think one other spot as well as a lymph node. *sigh*

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    Oh Canadagirl I'm so sorry. Remember that bone mets are easier to treat and your mom can live a long time once her treatment gets going. It's almost four years for me so far and doing well. Hoping for many more years for your mom.



    Love n hugs. Chrissy

  • Moiralf
    Moiralf Member Posts: 119
    edited February 2013

    Canadagirl  just posted on the other thread and boo that it is mets.

    It is only a small amount. What my breast care nurse called low volume. Trying to be reassuring and the fact that it is only a small amount is a good thing.

    hard to be positive about that right now I know but it is good. There is a term that they use to describe women with only small amounts but I have forgotten what it is. Ogli something. It might be what your mum fits into.

    What status and type is her cancer. I can't remember if you have said.

    How are you feeling about this all now? you have been on such a roller coaster for the last three months.

    Moira

  • Moiralf
    Moiralf Member Posts: 119
    edited February 2013

    Ok, going to stick with this thread Canandagirl or I'll get confused.

    Rads should be good for the pain. The short and quick number doesn't produce the tiredness that can come with the longer treatments. The hardest bit for me was the setting up day. Lying there and leting them poke and prod me to get the exact position and the the tattoos. Tiny dots on the skin. the rads themselves are over very quickly and the effects carried on for sometime after the treatments are done. So don't worry if there is still some pain at the end of the 5 times. My rads were called "spot welding" by the team.Thought that was funny way to put it but it sort of fit.

    Aredia was fine for me too. Had 18 months of it and have now stopped but can go back on it if my bone densisty drops. It was my opportunity to sit and read a book in peace and quiet once a month.

    She and you will feel much better now that you can move forward and know you are doing something to deal with the little Bu**ers. 

    I have had 5 years of this and doing great so I'm sure your mum will be actually doing better once she gets rid of the pain and the lumps.

    Plus she will know that no more should be developing,God willing.

    Moira

  • GoldenGirls
    GoldenGirls Member Posts: 121
    edited February 2013

    I'm more worried about the lymph node -- or nodes as he didn't specify. As he was skimming the report I saw something about a "cluster of nodes" but didn't see what was said about them. Does having lymph node mets make it much t worse? Everything happened so fast today that I didn't even think to ask him.

  • Moiralf
    Moiralf Member Posts: 119
    edited February 2013

    Hmm, I don't think it does but I could be wrong. 

    Think it is probably on par with the rest of the mets. 

    Maybe someone will know more and correct me. The treatment will work wherever the mets are so should take care of them too. 

    Annoying when you get home and think about things and start asking questions. You can remember to write questions down but when it is happening in the meeting things fly over your head until later.

    My onc always said I could e-mail him questions and he would aswer but he was such a busy man I didn't, but he had a breast care nurse that I would ask. She was very helpful and often she would explain things with more detail that he would. Maybe being a woman she understood the female type questions I would have.

    Moira

  • texasrose361
    texasrose361 Member Posts: 895
    edited February 2013

    Canada girl- if you look at the staging chart they have here on this webiste. It says that you can be stage 1b-3c with lymph node involvment. So the lymph node involment shouldnt be as concerning... Are they going to start rads to the clavical and T5? i guess i should find the other post :)

  • proudmom_wife
    proudmom_wife Member Posts: 176
    edited February 2013

    Got my MRI results back - no mets, but confirmed DDD and arthritis in my neck.  Now I get to learn about treatments for this pain in my neck.  Thank you for your words of wisdom, they really helped.

  • barsco1963
    barsco1963 Member Posts: 879
    edited February 2013

    ProudMom - so glad to hear that there is no mets. Now to get that pain under control! Hopefully it will be sooner rather than later.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    ProudMom that's really great news! So glad that your CT confirmed no mets but hopefully you will get that pain under control sooner rather than later. Good luck!



    Love n Gus. Chrissy

  • herstrong
    herstrong Member Posts: 53
    edited February 2013

    I saw a topic here a few months ago with a list of what you should get together to be prepared for the "end." I was going to copy it into a list for my file but never got around to it. Now I can't even recall what was in the list to search for it, lol! Can anyone help me out?

  • Chickadee
    Chickadee Member Posts: 469
    edited February 2013

    "A Place to Talk about Death and Dying..... "



    http://community.breastcancer.org/forum/8/topic/770023?page=25#post_3365529



    The list is in the thread somewhere. On exit: page 18. I printed it out and saved it. Now have to make myself start working the list.

  • herstrong
    herstrong Member Posts: 53
    edited February 2013

    Thanks Chickadeeeeee!

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited February 2013

    Thanks, Chickadee!  I had also misplaced this. Things are progressing much more rapidly than I had anticipated - thought stage IV would still give me a couple years, but found another new nodule yesterday, despite new drugs.  So I am feeling a bit pressured to get my affairs in order sooner rather than later.  I feel good right now, letrozole not bothering me too much, still walking and doing things that feed my soul, trying to use the mindfulness-based practices to remain in the moment, but my brain occasionally wanders into the anxiety and fear of not getting to finish things that I want to finish.  Isn't that a little silly?  What I know is that I have done nearly everything in my life that I had ever wanted to do, and am very grateful for that.

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