New information from my oncologist

mimivac
mimivac Member Posts: 2,143 Member
edited March 2014 in Breast Cancer #1
I had my second infusion yesterday and also had a long chat with my oncologist. I wanted to pass on some of the things we talked about in case in might be of interest to someone else:

1. Other people on this site have talked about this and some are doing it. There are clinical trials now that administer bone strengtheners to cancer patients in the hopes that it will help prevent breast cancer recurrence in the bones. There are studies backing this up, and my oncologist likes this protocol so much that she does it herself outside of the clinical trial setting. The only problem with getting it this way (not from a clinical trial) is that insurance often won't pay for an unapproved use of a drug. In other words, they would pay if you were taking the bone strengthener for osteoporosis, but not for cancer. I asked about the price if I go this route and she said it was something like $1000 a pop, twice a year, five times total. So a grand total of $5000 over two and half years. She urged me to do it in a clinical trial setting (but only if there is no placebo) to save money. The Washington Hospital Center in DC does this with no placebo given.

2. There is now a vaccine for persons who express HER, but not overexpress it. In other words, people who tested 1++, 2++, or 3++ but the FISH test made them HER negative. It targets the HER expression and is especially good for persons (like myself) who are also ER/PR negative, though others might also benefit. This is only available as a clinical trial right now and is administered once every six months. The drug is not Herceptin and is not designed for persons who are HER positive.

Anyway, that is what we talked about. Of course everyone's situation is different and your oncologist may have a different take on these procedures. Hope this helps someone.

Mimi

Comments

  • Eil4186
    Eil4186 Member Posts: 949
    #2
    Clinical trial
    Hi Mimi, I am in the clinical trial you mentioned. There are 3 arms; all three are "bone strengtheners" (bisphosfonates). One is given through an I.V. every so many months(I think this is the form you mentioned), and the other two are pills taken every day. All three drugs taken for 3 years. I'm taking one of the pills. We were randomly assigned to one of the three arms by computer. The trial has over 4000 people enrolled, all with brst. cancer stages 1, 2, or 3. I believe you had to have node negative status to enroll. Eil
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    WOW!
    Thank you, Mimi, for all of the info!!!!!

    This is so great...they weren't even talking about that when I went thru treatment, barely 3 years ago!!! I'm one of the 'lucky' survivors who has osteoporosis...and no reoccurance for stage II!

    Hugs, Kathi
  • mimivac
    mimivac Member Posts: 2,143 Member
    #4
    Eil4186 said:

    Clinical trial
    Hi Mimi, I am in the clinical trial you mentioned. There are 3 arms; all three are "bone strengtheners" (bisphosfonates). One is given through an I.V. every so many months(I think this is the form you mentioned), and the other two are pills taken every day. All three drugs taken for 3 years. I'm taking one of the pills. We were randomly assigned to one of the three arms by computer. The trial has over 4000 people enrolled, all with brst. cancer stages 1, 2, or 3. I believe you had to have node negative status to enroll. Eil

    Good to know someone in the trial
    Thanks for the info, Eil. I am node negative, too, so I should qualify. This sounds like a good study and makes me feel better about not being able to take Tamoxifen. It seems that you are doing everything you can to help yourself beat this for life.

    Mimi
  • mimivac
    mimivac Member Posts: 2,143 Member
    #5
    KathiM said:

    WOW!
    Thank you, Mimi, for all of the info!!!!!

    This is so great...they weren't even talking about that when I went thru treatment, barely 3 years ago!!! I'm one of the 'lucky' survivors who has osteoporosis...and no reoccurance for stage II!

    Hugs, Kathi

    Yeah for no recurrance!
    But sorry about the osteoporosis. Though I trust that you are receiving the best treatment for your situation since you seem to be so on top of everything. I love how much research there is on this cancer and the new drugs/procedures that seem to pop up every day. It really gives me hope that I can beat this thing.

    Mimi
  • Eil4186
    Eil4186 Member Posts: 949
    #6
    mimivac said:

    Good to know someone in the trial
    Thanks for the info, Eil. I am node negative, too, so I should qualify. This sounds like a good study and makes me feel better about not being able to take Tamoxifen. It seems that you are doing everything you can to help yourself beat this for life.

    Mimi

    A bit of insurance.
    Well, yeah, I decided to participate because I could help other future patients and perhaps give myself a bit more insurance at the same time.

    Their theory is that often breast ca recurs first in the bone before moving on to organs. These drugs create a hostile enviroment in the bone and therefore may prevent recurrence there. If the bones are a gateway to other recurrences, then they are hoping then by preventing it there, it(cancer) won't have a chance to get to other areas in the body at all.

    It makes sence when you think about. I didn't know they were still enrolling for this trial. I joined it July 06. Anyway, good luck with it, and blessings. Eil
  • cabbott
    cabbott Member Posts: 1,039 Member
    #7
    Cheaper option
    You might ask your doctor about bone strengtheners that are cheaper. The generic form of Fosamax is a weekly pill that is known to build bone too. You have to be able to swallow pills and remain upright for 30 minutes afterward. Folks with stomach or esophagus problems aren't good candidates. However, that's what my doctors recommended to build bones. They also recommended a bone density scan to keep an eye on my bones. It turned out one area of my back is a little weaker than normal--just ostopenia--so insurance covers me. With insurance I pay 8.50 a month, but I believe it may be on the "cheap" list of drugs at Walmart. Other places have low-cost options for pills sometimes too and contacting the drug companies themselves via internet often results in coupons or discounts of various sorts. You might try contacting them about the IV treatment too. Who knows! They might foot the bill even if you are not in the trial.

    C. Abbott
  • mimivac
    mimivac Member Posts: 2,143 Member
    #8
    Eil4186 said:

    A bit of insurance.
    Well, yeah, I decided to participate because I could help other future patients and perhaps give myself a bit more insurance at the same time.

    Their theory is that often breast ca recurs first in the bone before moving on to organs. These drugs create a hostile enviroment in the bone and therefore may prevent recurrence there. If the bones are a gateway to other recurrences, then they are hoping then by preventing it there, it(cancer) won't have a chance to get to other areas in the body at all.

    It makes sence when you think about. I didn't know they were still enrolling for this trial. I joined it July 06. Anyway, good luck with it, and blessings. Eil

    That's so good to know
    I haven't done a lot of research on the theory of the bone strengthener trial yet. It intuitively made sense to me, but I wasn't aware that it was believed that recurrence would strike the bones first. Very interesting, and encouraging that they are trying things to prevent that now.

    They are still enrolling for the trial, but some oncologists are giving the treatment outright now. So, I think your participation in 2006 has helped make the case for this procedure so that more people are now able to access it. Bless you.

    Mimi
  • mimivac
    mimivac Member Posts: 2,143 Member
    #9
    cabbott said:

    Cheaper option
    You might ask your doctor about bone strengtheners that are cheaper. The generic form of Fosamax is a weekly pill that is known to build bone too. You have to be able to swallow pills and remain upright for 30 minutes afterward. Folks with stomach or esophagus problems aren't good candidates. However, that's what my doctors recommended to build bones. They also recommended a bone density scan to keep an eye on my bones. It turned out one area of my back is a little weaker than normal--just ostopenia--so insurance covers me. With insurance I pay 8.50 a month, but I believe it may be on the "cheap" list of drugs at Walmart. Other places have low-cost options for pills sometimes too and contacting the drug companies themselves via internet often results in coupons or discounts of various sorts. You might try contacting them about the IV treatment too. Who knows! They might foot the bill even if you are not in the trial.

    C. Abbott

    Good idea
    Thanks, that is a good idea. If I can't get into the trial I will ask about this. I want to get the best treatment possible, but it sure wouldn't hurt to save some money these days.

    Mimi
  • Chellebug
    Chellebug Member Posts: 133
    #10
    Clinical Trial
    Hi Mimi,

    I'm in that clinical trial with bisphosphonates, too. I think it's called the SWOG S0307 study. I just started 6 months ago. I was randomly placed on the Zometa arm (also known as zoledronic acid). Although the study pays for the drug, I am charged for the fees to infuse the drug. Thankfully, my insurance is covering that.

    So once you find out more about the study, make sure to ask the clinical nurse in charge of the study as many questions you can think of. There are risks involved, as with any drug, so make sure you are okay with those risks.

    My husband and I decided we go forward with the clinical trial, but if any of the side effects were too much to bear, than I would get out of the study. I was pre-menapausal before diagnosed with cancer and I opted for my ovaries to be removed at the same time that I had my bilateral mastectomy. So, I was very grateful for the chance to build up my bones.

    Chelle
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #11
    Thank You for this Info
    I have small bones and family history of osteoporosis. I appreciate everyone's info so much! I asked my oncologist about my bone strength, but he just mentioned a bone scan when chemo is over and calcium for now. I am going to call him back and pursue the bone scan/fosamax option and ask about any trials. I was node positive so would not qualify for the one you are in and Mimi would qualify for. But the vaccine might be a possibility.

    Thank you again. I learn so much from this board!

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