Where oh where is that crystal ball when you need it?

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Gabe N Abby Mom
Gabe N Abby Mom Member Posts: 2,413
in Breast Cancer #1
I have one of 'those' decisions to make...I saw the oncologist today. Now he wants me to take a break from chemo. He doesn't know how long the break would be, that would be determined by future ct scans.

For those of you who don't know my history...I'm stage IV triple neg IBC with mets to the lymph nodes between the lungs. I've been on chemo for 8 months, 2 months of xeloda (didn't work) and 6 months of weekly abraxane (keeping the cancer stable).

Some of what my onc said..."the treatment plan is the same whether the lymph node is 2cm or 4cm". Meaning that if there is some growth in the cancer, it doesn't really change anything. He also said that to some degree, the success of future chemotherapy will depend on my body's ability to tolerate it. And my body may not be able to tolerate those future chemos if it is depleted from the current chemo. What a dilemma, huh? How does one decide if chemo today or chemo in the future is more important? Or better at dealing with the nasty beast?

I told the doc that yes, I'm afraid of the cancer growing. But I'm more afraid of the sneaky aggressive IBC going to other parts of my body. In some ways I feel 'lucky' that we found the mets while it was only in those few lymph nodes. What if it spreads while I take a break?

Immediately, we are postponing my seventh cycle of abraxane. No chemo this Friday, and I'm to think and get an answer to my doc in the next few days. I'm really looking forward to all your comments and perspectives.

Hugs and love,

Linda

Comments

  • missrenee
    missrenee Member Posts: 2,136 Member
    #2
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    I agree, Linda, it would be wonderful
    if we could predict the future. I know just how you feel. I'm now Stage 4 with bone mets. When the bone mets were discovered I had to decide whether to do a stronger estrogen suppressant (obviously the Arimidex either stopped working or never worked) or start a chemo. It was so hard to decide. I was so afraid of choosing the wrong one and then having the cancer go rampant. Finally, I said to my onc.--if I were your sister, what would you have me do. I was leaning toward the Faslodex injections and so was she. So, I've been on them for 4 cycles and having another cycle of Faslodex injections and Zometa infusion next week. Then we'll do a scan to decide what's what: should we continue this treatment or do we start chemo. Makes you really feel between a rock and a hard place.

    I don't know if there really is a way to truly know what to do. I went with my intuition, talked to a few close friends/family and asked the doctor her opinion. I think whatever you choose, it will be right. You'll get scanned again to determine your course in the future as well. I have heard that chemo can be more successful in the long run if your body has a chance to regroup from it and start again at a later date.

    My best to you, Linda--I know how hard this is, but you'll make the best decision--especially if you ask for some help from your higher power. You won't go wrong.

    Love and hugs, Renee
  • MAJW
    MAJW Member Posts: 2,510 Member
    #3
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    Oh Linda...
    This sucks! I honestly don't have any answers for you....I feel certain I will experience what your going through, being Stage IV also, at some point...
    This is a decision you'll have to make along with your oncologist......I hate this for you...I think he feels like you need a break....I was given a break of 4 weeks from the Carboplatin and only received the Avastin ...my platelets were low...plus I have lost 23 pounds and didn't need to...
    The Avastin cuts off the blood supply to the tumors...

    Go with what your body is feeling...and your MO's advice...

    Great big hugs...
    Nancy
  • New Flower
    New Flower Member Posts: 4,294
    #4
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    Linda sorry that you are having hard time
    I think you have to trust your oncologist. Your body probably need a vacation that is why your oncologist is canceling Friday. 8 months of Chemo sounds very rough road to me. If you have to get Chemo in the future, probably your doctor will change your medication to a different one.
    Please enjoy your Friday off and Memorial weekend
    Hugs
  • eihtak
    eihtak Member Posts: 1,473 Member
    #5
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    Decisions
    Decisions of this nature need less thought and more prayer in my opinion, tho I have an incredibly hard time making decisions so have no choice. I was still recovering from treatment for Anal Cancer which included chemo when diagnosed with the Breast Cancer, and as Renee said, my doctor also mentioned the need for our bodies to re-group or at least try to generate some new healthy cells before standing up to another blast of chemo. That being said, if I had to do this, I would take the break and pray for some rejuvination and when the time comes go in for the kill!!!!! You are a brave, strong, smart woman, and somehow your mind and body will tell you what to do. You will surely be in my prayers!
  • debi.18
    debi.18 Member Posts: 850 Member
    #6
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    Wow!
    Linda, Wow! What a dilemma. First, I also would ask your onc what he would recommend to his mother or daughter. 2nd, go with your gut and do what you feel is best for you. I'm sure you'll make the right decision. As always, I admire your strength!

    Hugs and Prayers, Debi
  • SIROD
    SIROD Member Posts: 2,194 Member
    #7
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    Toxicity, a Factor
    Dear Linda,

    I have observed from reading online discussion boards since 1997 that people do die from toxic poisoning from chemotherapy or radiation. Some people never take drug breaks. I was very surprise to read that one poster on this board had over 85 chemotherapy infusions in less than 21 months. I know her cancer was unrelenting in it’s aggressiveness. The toxicity issue is a big factor with these drugs. I was not surprise to read of her decline and death. There were others over the years that had an earlier demise due to toxicity.

    Your oncologist knowledges and experience is the reason you have him and the suggest of a break is what he deems is needed for your body to recover. With the break from work this summer you have an opportunity to greatly recover.

    Wishing you the best with your difficult decision.

    Doris
  • Texasgirl10
    Texasgirl10 Member Posts: 668
    #8
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    debi.18 said:

    Wow!
    Linda, Wow! What a dilemma. First, I also would ask your onc what he would recommend to his mother or daughter. 2nd, go with your gut and do what you feel is best for you. I'm sure you'll make the right decision. As always, I admire your strength!

    Hugs and Prayers, Debi

    Goodness
    Linda, we are pretty much in the same boat. Both of us triple negative stage IV IBC with mets to the pleural cavity. I also have mets to my aortic arch. I was doing taxol every week but I just couldn't handle it so now I'm doing FEC every 3 weeks like I did TAC. I just dont know what to think or how to feel anymore. I agree with Renee, ask your onc what he would recommend to his mom or sister. After reading Sirods post im scared about toxicity now. I just hate this disease!!!

    I'm so sorry that your having to deal with this but please know that my prayers for you have never stopped and they never will. Stay strong my beautiful pink sister and know that we are here.

    Hugs and God Bless,

    Dawne
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #9
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    Texasgirl10 said:

    Goodness
    Linda, we are pretty much in the same boat. Both of us triple negative stage IV IBC with mets to the pleural cavity. I also have mets to my aortic arch. I was doing taxol every week but I just couldn't handle it so now I'm doing FEC every 3 weeks like I did TAC. I just dont know what to think or how to feel anymore. I agree with Renee, ask your onc what he would recommend to his mom or sister. After reading Sirods post im scared about toxicity now. I just hate this disease!!!

    I'm so sorry that your having to deal with this but please know that my prayers for you have never stopped and they never will. Stay strong my beautiful pink sister and know that we are here.

    Hugs and God Bless,

    Dawne

    Tough decision
    What your oncologist (and others here) have said about taking a break and allowing your body to rebuild healthy cells makes sense, but it's still scarey. Do you think you'd feel better with a second opinion to help you make this decision?

    Suzanne
  • camul
    camul Member Posts: 2,537
    #10
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    Hi Linda
    I am starting my break in June. Tried to in November, but had a sore chest the first week of the break and a ct scan showed it spread while on Halaven to connective tissue in the ribs and chest wall. I was so scared to even take a break at this time.

    Started on weekly Navelbine and Herceptin the second week of November, so didn't end up taking a break. Now, I am exhausted all the time, keep getting UTI's, low blood counts. Even though I didn't want the break in November, now I know why, if you are stable, your body needs a break to tolerate the chemo.

    I will get an Xgeva injection end of June,(same as Zometa), but no Herceptin or Navelbine for 4 weeks, and will stay on the Evista (hormone blocker).

    I agree, this is a really hard decision. But as contradictory as it is, I was considering stopping chemo completely now, because of exhaustion and tired of being sick, yet scared to take a break from the chemo. I know, it makes no sense!!!! Now knowing that I get a break, I am definitely planning on starting back on some form of chemo in July, or when the oncologist feels it is necessary!

    Hugs, and prayers to you.
    Carol
  • MsGebby
    MsGebby Member Posts: 659
    #11
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    So not fair
    I really can't add anything to this thread as I am not stage IV and never had chemo.

    I just wanted to let you know that you have my positive thoughts and prayers everyday. I believe in the power of God. Faith is what gets me through whatever is thrown my way. When I am fearful or uncertain, I lay my worries at His feet and ask for His guidance. Somehow, it always works for me.

    My heart goes out to you as you navigate this treacherous road.

    Big HUGS

    Mary
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #12
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    Hugs & Prayers
    Linda... my heart goes out to you and your family during this time. Not an easy decision for you to have to make. Either way, I will lift you in prayer and ask God to continue watching over you and your Family as you keep moving forward. Stay present, immerse yourself with life, and focus on your recovery.

    Bear hugs to you.

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