Getting worried/scared

Mamita49

4 years its been when cancer came back to liver. First Navalbine and then Doxil to get rid of liver buggers. Gone since ever then, BUT......

it seems the cancer comes ALWAYS back in one tiny little lymph node, so....

Femera one year, Lymphnode

Faslodex one year, Lymphnode

Afinitor/Aromasin one year, Lymphnode.

Now I will get Ibrance/Arimidex.

And then........nothing left, ......I used all the hormonals. I am scared, that it will work for a bit, and then...

Chemo ? Please no.

Are there other treatments after Ibrance/Arimidex ? If I would know that other options than Chemo are available, it would be ok.

Any experiences, PLEASE. I know, I am looking too ahead of future, but I am getting so worried.

Thanks

Carol

pajim

Carol, you should look into a clinical trial or two. There's a search here at BCO, or you can try breastcancertrials.org

https://www.breastcancertrials.org/bct_nation/home...

Are you switching meds as soon as the one lymph node lights up? Would you like to consider waiting a couple of months to see how fast the cancer spreads? Possibly you could get a little longer out of each treatment if you waited for a little more progression. I know some docs like to switch as soon as they see any resistance, but I managed to stall a full year after a new met appeared. We just monitored the situation for a while. Whilst the met appeared it didn't spread for 10 months.

I'm on Faslodex/Ibrance now. The next line will be either A/A or Xeloda or a trial. Hoping not to have to make a decision for quite a while.

Mamita49

Thanks pajim,

My Onc likes to keep me NED as soon as this one damm Lymphnode appears. Its never the same node, always a different one.

I have a lot of Energy, do a lot, and he likes me to keep it that way. He always says, NED is my goal, but I never questioned it, but I will ask him in 2 weeks when I see him

WHY switching so soon.

You got me questioned.

I will let you know,

Carol

cive

Some women have taken one of the hormonals and then switched when the first one ceased to work, then after the second one quit working, the first one started working again.

pajim

Mamita, different docs have different philosophies. At the beginning I had a really hard time with the idea of 'waiting after progression'. One of the other ladies here had done it otherwise I would have freaked out. It worked out for me. If it turned out that three months later cancer was all over I would have been really really unhappy.

Your doc feels NED is the goal. If you agree with him that's what you should do. Its not wrong. For all I know my doc has a different approach with other patients.

I like cive's approach too. And one more: once your cancer becomes hormone resistant, some docs like to try estrogen as a therapy. The cancer has so many estrogen receptors that estrogen "blows up" the cancer cells. Don't quote me, but I believe about 30% of people respond to it.

Fitztwins

I have heard of reusing hormonals again. Plus I did tamoxifen too!

blainejennifer

Yes, you can reuse anti-hormonals. My Onc says that he likes to have at least a three year period in between similar anti-hormonals.

But, I want to take a moment here to defend chemo. I have been on three, Taxol, Xeloda, and Halaven. I tend to use up an anti-hormonal, then suppress the disease with a chemo, then try another anti-hormonal. Life on chemo is OK as stage 4 doses are lighter than early stage treatment. I did a year of Taxol, a year of Xeloda and 6 months of Halaven (the hardest one, but the most successful).

Do not fear chemo. The stuff works, and most of the time you barely realize you are on it - except for the hair loss, which is tedious. The ones you took, Doxil and Navelbine, are notoriously hard. Most others are much pleasanter.

Hoping that your quarrelsome lymph node settles down,

Jennifer

Delvzy

Just been diagnosed with stage 4 don't know the extent yet but the bone scan showed areas in my spine ribs and back of skull. I am terrified I wil

Have to go straight onto chemo Would love a gentler approach. Do they do any other scans to check organs

Bestbird

• You have many more options than you may think. Below from my MBC Guide is a list of possible therapies.You (and others) are welcome to request a complimentary copy of the 120+ page booklet by visiting the top of this page:https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32
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The sequence of providing hormonal (endocrine) therapy for postmenopausal patients will vary, as much of it depends upon what - if any - hormonal therapy drugs the patient has previously taken.Generally, there is a choice of providing single drugs or a combination of drugs, with combination drugs generally precipitating more side effects.Patients are urged to discuss the various options with their doctor and to verify insurance coverage, since it is possible that some of the combination drug regimens listed below may not yet be covered by insurance.

The following sequence of single or combination hormonal therapy drugs has been lifted from a presentation made by Dr. Maura Dickler of Memorial Sloan Kettering at the 2015 San Antonio Breast Cancer Symposium. Her recommendations are based upon the results of clinical trials as well as her own clinical practice. From: https://sabcs.cmeoncall.com/OnlinePlayer/153

• Single Agent Hormonal Therapy Sequence:
  • First line treatment should consist of a non-steroidal Aromatase Inhibitor (AI) such as Letrozole or Arimidex
  • Second-line treatment should be either Faslodex (500mg) or Aromasin
  • Third line treatment should be Tamoxifen
  • Fourth line treatment may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)
• Combination Hormonal Therapy Sequence:
  • First line treatment may consist of a combination of either Arimidex with Faslodex (500mg), or Letrozole (or Faslodex) with IBRANCE.
  • Second-line treatment might be a combination of either Faslodex (500mg) with IBRANCE or Letrozole with IBRANCE, or Aromasin with Afinitor.Note:In second-line treatment, the combination of Faslodex and IBRANCE more than doubled progression-free survival (PFS) compared with Faslodex alone, and this was also true for people with ESR1 mutations.From: http://www.medpagetoday.com/MeetingCoverage/ASCO/51855and http://www.healio.com/hematology-oncology/breast-c...
  • Third line treatment could be Tamoxifen with Afinitor
  • Fourth line treatment, which is a single agent, may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)

Side Effects of Hormonal Therapy: Within the first several weeks of hormone therapy, patients may experience some bone/joint pain, hot flashes, dizziness, and other side effects. If a patient feels that that the side effects are becoming too challenging to cope with, they should speak with their doctor about switching to the non-generic form of the drug or possibly switching to another drug.These patients may also wish to refer to the section entitled, "Therapies for Pain and Neuropathy."

Re-trying ("Recycling Through") Hormonal Therapies: Patients who have developed endocrine resistance and have been on chemotherapy may find this of particular interest.At the 2013 San Antonio Breast Cancer Symposium, one expert from Dana Farber stated that one of the most common suggestions that physicians should make for patients with initially hormone sensitive MBC who have had multiple lines of chemotherapy is to revisit the endocrine therapies, even in late stage disease. And he added that this methodology is probably not being done with the frequency it deserves.

From: Page 3 (under "Final Clinical Tip")http://advancedbc.org/files/SABCS_Hal_Burstein_on_HR+MBC.pdf

Bestbird

Delvzy, I am sorry to hear of your recurrence. Please have the bone mets biopsied to check their ER, PR and HER2 status, as they may differ from your original bc.

If it turns out that you are hormone receptor positive, then you may be a candidate for hormonal therapy. I strongly suggest you seek a second and even a third opinion about your treatment irrespective of what your pathology report says.

Since your bones are affected, you will receive a bone directed therapy such as Zometa or Xgeva no matter what your cancer's profile is.

Best wishes, whatever you decide.

Delvzy

have you been on those drugs

LuAnnH

You can reuse hormonals but there has to be a period (used to be 2 years last I heard but 3 isn't unreasonable either).  When I got off navelbine I moved onto afinitor.  Afinitor is a drug that somehow jumpstarts the hormonals into working again.  I was on afinitor, aromasin and Herceptin for about 2 years, but I became very ill and hospitalized due to a severe pneumonia.  All tx was stopped while I tried to recover from that illness and after 6 weeks of not tx we restarted aromasin, then at 9 weeks we reintroduced the Herceptin.   I opted to not restart the afinitor for at least another 3 months.  My onc was agreeable as long as I got another scan at the end of the 3 months.  I was still NED and have stayed that way.  I don't know what afinitor does but I am back on aromasin and ironically aromasin didn't work for me the first time I tried it.  We all have different responses but if you respond to hormone tx there are lots of possibilities for you.

Mamita49

I saw my Onc this week, and he told me that you can reuse treatment ONLY if you stopped due to other medical conditions, like side effects, or because

the medical given time of many years is over.

You CANNOT reuse any treatment, he said, if you EVER had progression on it. The cancer is then resistant to that medication, if it is Chemo or Hormone treatment.

Well, this is what he said.

ScienceGirl

I was on Tamoxifen when my cancer spread to the bones and became stage IV. When I failed ibrance and faslodex my onc at MSKCC suggested we try tamoxifen again. After 2 months of only tamoxifen and no other treatment my tumor markers went from >600 to 420, my markers are very reliable for me. It's only been about 2 years since I was taken off tamoxifen the first time. My primary onc and myself are very surprised that the tamoxifen appears to be working.

pajim

Mamita, I realize I'm contradicting your doctor and I don't want to affect your trust in him or her, but tumors change over time. Sure, they become resistant to hormonal treatments. Cancers are not all one type of cell. Some cell types become ascendant, others die. The heterogeneity of the cancer (many different kinds of cells) and the constantly mutating cells are why we haven't cured this disease.

One example of this is when someone's original biopsy is HER2+, and the second biopsy is HER2-. Part of that is some cells are HER+ and some are HER2-, but it's also possible that the treatment killed off [most or all of] the HER2+ cells, leaving the HER2- cells behind.

Once you move off hormonals, and take other kinds of chemotherapy, the tumor will mutate again. There's no guarantee that your tumor will become sensitive to hormonals again, but it certainly might. I'm guessing that no one has studied how common it is for hormonals to work a second time. I'd also guess you need some time and treatments in between. Rosevalley and Stephanie have also found they can work again.