Navelbine/Herceptin Enough for Extensive Liver/Bone/Skul Mets?

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momallthetime
momallthetime Member Posts: 1,575
edited August 2016 in Stage IV/Metastatic Breast Cancer ONLY

Extremely anxious for today's follow up. Dani, my daughter, as many of you know is just 32yrs old, with all those mets. We started this new protocol, she is on the 2nd round of 2 weeks on one1 week off, with new Onco at a a new Center.

Onco was not very optimistic when speaking with me. The liver mets, jumped from 2 discrete ones in June to innumerable on a PET/CT 4 wks later. I tried very hard to ask for a new biopsy to confirm status, but Onco tells me the treatment would be the same. She is ER+PR+Her2+++

My concern is Navelbine not being strong enough. Of course in a way, I don't wanna see her vomiting, loosing her hair etc... with a stronger chemo, but that is in a perfect world. She was very upset at first when she heard she would be on Chemo again, so Navelbine not having these SE seems more attractive. BUT I am trying to find more ladies that were on Navelbine, is it not too mild? Everywhere I look on BCO seems every one is on a much stronger Chemo. She is active and very independent. Goes about taking care of her little girls etc... so is Onco going overboard not wanting to give her something that may not allow her to be able to do these things or does she really think Navelbine could do the trick.

I, we, don't wanna waste time and be on something that won't do much for another few weeks, and then find out that it did not help. Nothing really has been helping her for the longest time. And we did say that she wants to be able to be as active as possible, so should I insist? I don't even know if Onco would listen, I am the one that speaks details with Onco, bcs Dani wants to be busy with life and does not want to deal with the nitty gritty.

What is your experience, knowledge on it? I only found one other lady on the liver thread that was on Navelbine. Why am I not finding many more? Scary to say the least.

And if you were on Navelbine, how soon after did you have scans? I would like to request after the finish of this 2nd cycle. I know the RO for the brain wants to do it at the end of 2nd cycle rads if particularly one large lesion does not get smaller with this tx. So should I request PET/CT at the same time? Could we see results by then already.

TIA for all your suggestions and help

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited August 2016

    Hello MomAllTheTime.

    I've been curious about what was happening with Dani. Your oncology team is always on the cutting edge of new treatments.

    You only found one lady on this protocol because it's still in clinical trials. If you Google something called the VELVET trial, you will learn more about it. So the oncologists are now studying the effectiveness of Perjeta and Herceptin with other chemotherapy drugs and navelbine is one of those drugs.

    Oncologists know that dual therapy for HER2 positive breast cancer is effective, but they need to combine it with chemotherapy drug to eliminate cancer cells. The Cleopatra study used Taxotere. Since the publication of that study, they have gone on to try different chemotherapy drugs. One drug they know is safe and effective to use is also what they call a Taxane called Paclitaxel or Abraxane.

    Now your MO is trying a chemotherapy drug from another class of drugs. The chemotherapy drugs are classified as follows:

    Vinca alkaloids: Vincristine, Vinblastine and Vinorelbine. Taxanes: Paclitaxel and Docetaxel. Podophyllotoxins: Etoposide and Tenisopide. Camptothecan analogs: Irinotecan and Topotecan

    There was a brief discussion on this use on OncLive in March. Some of the oncologists in the discussion had some thoughts on using Vinca alkaloids in this setting, but the hope is that the cancer will respond to the Vinca alkaloid.

    I know that Dani has had a complicated history. Has she ever been on Lapatinib ( TYKERB)? Some of the oncologists in the discussion felt that a brief period of time on this drug after the prior use of Hercptin and Perjeta will increase the effectiveness of navelbine.

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited August 2016

    Regarding the frequency of PET scans, there doesn't seem to be an accepted standard of care, but a general practice.

    For clinical trials, they may be done every two months. They may be done every two months during the initial phase of treatment.

    Following treatment for metastatic breast cancer, they may be done every three months for the first year, then every six months thereafter.

    I just finished reading the opinion of an oncologist who was treating patients with a new drug for metastatic lung cancer in 2010. This was a clinical trial, and with this particular cancer they were doing PET scans at day 14 and day 59 after initiation of treatment. Remarkably, they were able to detect a response in some people at day 14. But the problem is: you may need to wait until day 59 before you change treatments because the day 14 scan may be too early to detect changes of a positive note.

    The protocol with Navalbine is a bit different than with Taxotere. I know that we waited until I completed two cycles of Taxotere before we conducted the first PET scan after initiating treatment - which was about 8 weeks after starting therapy. So a repeat PET scan should be scheduled within an acceptable time frame after starting Navalbine. If you could find the protocol they are using for the clinical trials, then you would have some idea about when to anticipate another PET scan.

    I know this is an emotionally difficult situation for you. You want them to find a treatment that will work for Dani. We are all hoping and praying for her.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited August 2016

    Hey sweetie, missed so much!! What if I tell you someone close to me got dx with invasive prostate cancer right out of the gate, and I am helping the couple navigate the next step. It took a enormous emotional toll and time. So I only had time to run to the liver thread, and the brain thread both which I am most worried about now. Both pending by a hair.

    Thank you so much for your wise advise. Always so knowledgeable, what a pleasure. How are you doing? And Yeah, I do recall Onco saying it was a clinical trial. Funny thing is Ins called, and asked if it was a clinical trial, because for clinical trial they would not pay. Weird no?? Now, that you mention Clinical trial, it makes more sense that we don't hear it as often. I did ask today NP about not knowing a lot of ppl on it , she said in their practice a lot of women are using it.

    I tried Google what you said about finding out how often to do the scans, but could not see a time frame. Tomorrow I will receive a response to what they decided about the timing. Something about depending on TM's but I am sending an email to them, her TM's are not helpful.

    Tomorrow is another day, and I will try to check on you at Herceptin thread.

    Today's visit was more relaxed, I pointed out about her weight loss and we looked at the data, it seems that somewhere her weight was posted as 5LB heavier, and then it looked like she dropped a lot, but the rest is not terrible, so it does not make much sense. And hopefully, we are gonna be watching her enzymes, so to make sure in not to get in bigger trouble.

    Thank you again, my friend.!




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  • pwilmarth
    pwilmarth Member Posts: 235
    edited August 2016

    Glad to hear from you Mom.

    The clinical trial part is important - it's what pays for the drugs and the PET scans. So if Dani has been enrolled in a clinical trial, chances are the protocol for the trial will determine when she gets her PET scans.

    I know that Navelbine is produced by Hoffmann - Laroche and they are funding the trial. All of this is good news for you because you don't have to battle the insurance companies over who is gonna pay for the Perjeta, which it seems was an issue in the past for Dani.

    As far as using Navelbine with Herceptin - that has been done for many years, but the study is testing the effectiveness of the navelbine with Perjeta and Herceptin.

    As much as possible, the drug companies are trying to stay competitive by combining their chemo drug with H&P

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  • MarshaMay
    MarshaMay Member Posts: 95
    edited August 2016

    So sorry to hear about your daughter. I was diagnosed de novo in 2010 and my finitial treatment was Herceptin and Navelbene. And it was very effective in shrinking my tumors. It worked for me for over a year and was quite manageable the whole time. My onc preferred scans every 3 months. I wish you both the best.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited August 2016

    pwillamrth thanks sweetie. this tx does not have Perjeta with it. They did not even try. Her TM's are inching up. In a practical way form hearing a lot in these boards, a lot of opinion is that when on tx TM's could go up. Maybe. But this team informed me on Friday, after getting back these TM's that scans will be done at the end of this 2nd cycle.

    MarshaMay thx for the hope. Were you diagnosed with agressive grade also? And I see that you went to taxanes, taxol and or xeloda. These are much stronger in SE's right? I know they hesitating in treating her like this. But I would like them to push it. Where were your mets Marsha? Hers are in the bones, liver and all over the skull.

    Thanks for caring.

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  • JFL
    JFL Member Posts: 1,947
    edited August 2016

    Mom, I would not equate strong chemos to necessarily more effective. Chemos with less side effects are generally just more targeted to kill the cancer cells with less collateral damage to healthy cells. Also, everyone responds differently to different treatments. Mild ones can be very effective and harsh treatments can be very ineffective. Unfortunately, there is no sure fire way to predict this in each individual. I am on Xeloda now, which is an oral chemo pill with minimal side effects - no hair loss, material appetite changes or significant fatigue - my only side effect is hand foot syndrome. I work full time, care for my toddler and continue to run for exercise. Although it is "mild", it has worked very quickly to inactivate and shrink my boatload of liver mets.

    Also, Grade 3 typically has better response to chemo because chemo targets fast-growing cells and Grade 3 has plenty of those. I am also grade 3. My mets progress VERY quickly, but also have responded to each of my treatments very quickly, even hormone therapy alone with no chemo.

    I hope the new regime works well.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited August 2016

    JFL thx so much. I probably will ask docs about Xeloda tomorrow, as you will see on the other thread, she had numbness on her leg, they had a emergency MRI and yep onto RADS asap. She is exhausted! I know the will wanna change treatment even before the PET/CT results from next week.

    They are being very good about everything, but I know they are scared! And it scares me!!

    So happy for you. I'll let you know.

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