A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Jun 6, 2016 11:23AM
If you've followed my posts, you know I've had a tumultuous cancer journey - diagnosed at 30 (in Spring 2011) with DCIS, recurrence the following year, and Stage IV the year after that. Mets in spine, lungs, pelvis. Had ovaries out.
Taken tamoxifen, arimidex, Xeloda, Abraxane, and Ibrance+Letrozole, and Xgeva.
Had radiation to chest, spine and pelvis.
Had seven surgeries in the past five years, none of which went well.
Was told by my doctors to get my will and power of attorney ready, had hospice discussions, and end of life planning. Could not walk, eat or breathe, sometimes all three at the same time. Lung catheter. Severe neuropathy.
Right now my tumor markers are normal, and I am NOT ON ANY MEDICATIONS. I stopped Ibrance in December 2015, and Letrozole a month ago. I have never felt better. CT and bone scans show the cancer is stable.
I had liver problems but took Himalaya Livercare as directed for three months and am fine now.
Vitamins I am taking: flintstones children's chewables, vitamin D (5000), vitamin C, vitamin B complex, vitamin methyl b12, biotin, folic acid, triple flex, and chelated fully reacted magnesium.
Every morning I take 1/2 tsp turmeric with warm water.
Every evening I have a glass of lemon water (1 whole lemon plus water).
I am vegetarian, have milk and dairy with no antibiotics or hormones.
My doctor told me that new studies indicated that the Xgeva is just as effective twice a year as it is once a month. This coincided with a change in my insurance (to Medicaid) which decreased his reimbursement amount. Studies show that the Xgeva causes a broken thigh bone in cancer patients who are also on steroids (prednisone or dexamethasone). So if that is you, beware. My doctor had me on daily dexamethasone but I weaned myself off of it (over two months).
I exercise every other day - yoga and personal trainer. Slowly I am able to walk and jog and jump again.
If the cancer comes back, so be it. For now, I feel great, and that is how I want to live the rest of my life.
I'm getting my tumor markers tested again next week to confirm. If they are up, I may go back on half a letrozole. A lot of women take half a letrozole dose and it works just as well but has fewer crazy side effects (my doctor said cutting the pill in half is okay). I won't give up walking for ANYTHING, not even to live. Quality of life is more important than quantity to me.
I just wanted to share what I've done in hopes it works for you too. Definitely take the turmeric, it took the edge off a lot of chemo treatments for me.
Best wishes to you all, you have been a great support to me.Log in to post a reply
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Posts 1 - 23 (23 total)
Jun 6, 2016 12:09PM zarovka wrote:
Nice work Sarah! Congratulations on stability and normalcy!
What triggered your decision to go off of Ibrance. How long were you on it?
Stable tumors can be necrotic (dead) tissue. I am hoping that is what you are see in the CT scan is dead tissue and ibrance/letrozol killed it off. If so, a healthy lifestyle, an intelligent complementary regime and light hormone suppression could be just the right thing.
If and when I get stable or NED, I am considering backing off the standard treatments and focusing on health, along the lines of your strategy. I am very interested in updates on how you are doing. I am having a hard time on letrozol.
Your experiment takes a lot of courage. I believe there is a point where the standard of care will work against you. Doctors don't don't know when that point is reached. But with prayer, I believe you will know what you need.
Sep 6, 2016 12:14PM hawksfansarah wrote:
I had a few glorious wonderful amazing months off of ALL MEDS! I had energy and felt AMAZING. It was a good run for two months. I even joined and attended a boxing class three days a week at my gym!
Now my tumor markers have gone up 5 points (from 37 to 42) and the liver marker numbers (AST, et al) are trending upward, so I'm back on letrozole - but only a half a pill every other day. It's keeping me healthy and keeping away the side effects. It's important not to live in fear, but also be practical.
Oncologists get $4500 for one shot of xgeva, $750 for one visit, and $50 per generic letrozole pill. My pharmacist has his own pharmacy and lab too, so he's making bank. When my health insurance changed and I no longer received my xgeva shot at his office (where he made the money) and instead at the hospital (where the hospital made the money) he said the xgeva shot only makes a marginal benefit to patients with bone mets and that I could stop any time I wanted (because otherwise his office has to do work and send the referral to the hospital every month).
My doctor said as long as I take around 14 days of letrozole in a month, I'll be all right because it stays in your system that long.
I WILL note however that just a week after getting back on letrozole (the half pill dose) I started to have difficulty walking, back pain, nerve pain, and stomach pain again.
Letrozole can be halved and quartered (but buy a proper pill splitter for that, because the pills are tiny). They prescribe letrozole to men with big breasts (moobs) who want them to go away. If you check out those forums, those guys split the pill into 1/2, 1/4, 1/16 even! They lower the dose when they start to feel size effects.
Men would never tolerate the misery we women put up with in our cancer treatment.
Sep 6, 2016 12:21PM hawksfansarah wrote:
My doctor told me to just continue with Ibrance. It was very toxic to me, and I COULD NOT walk. I was using a walker and was advised to use a wheelchair. It was very painful. I could only use the bathroom with assistance getting off the bed and sitting on the toilet because I was so unstable because of the nerve pain in my feet.
Ibrance costs $500 a pill, and my doctor was the pharmacist, so it was never in his interest to tell me to go off the med. My condition improved EXPONENTIALLY off the Ibrance.
If you look at prior studies, a lot of women took letrozole/Femara for five years with no problems. Ibrance is to make it so you can take Femara even longer. But I was on Ibrance for less than six months and it was turning me into a cripple already. I wanted to stop while the damage was still reversible. So I did.
I'm actually interested now in the Endopredict test approval for the US market (Myriad Labs) and Venetoclax which is in Phase 2 trials for breast cancer. The initial results show Venetoclax destroys cancer with NO SIDE EFFECTS. Some people in the study had a horrible time though. So I guess it either works or doesn't work, no middle ground.
Sep 6, 2016 12:26PM hawksfansarah wrote:
I'm not worried about experimenting on myself. I have stage 4 cancer. The meds are hard. The docs want to suck every last penny out of you, so they need to keep you alive. It's gotten to the point where if I complain about a side effect I just get told to basically suck it up and be grateful to be alive. I value quality of life over quantity. Better a glorious day than a decade of crippling pain from either cancer or the side effects. And honestly, the docs are basically experimenting on you anyway. Better you, you are the only one who has your own best interests at heart. My doctor confessed that the results with Ibrance and Femara are basically unknown, but he could not advise me to go off the meds because of liability reasons. So a lot of the advice we as patients get at this point is to prevent a lawsuit. It is either for a doctor to follow the standard prescription guidance path (which provides legal coverage under the "standard of care" principal) than to take a patient's individual situation and beliefs into account and risk a lawsuit if it all goes wrong.
Sep 6, 2016 05:09PM Longtermsurvivor wrote:
Hawksfansarah, thanks for sharing your fascinating stories!
Like you, I experiment on myself - to the extent that I don't even tell people here much of what I do or don't do. It would likely be a really bad idea to follow in my footsteps. :)
My generic femara/letrazole runs under $20 per MONTH - not pill. I get it from Walgreens and could probably get it for less at Cosco, where you don't have to be a member to access their pharmacy. Medicaid is likely to pick up the tab on prescriptions, but check your state's coverage.
I'm so sorry to hear that your doctor is making a killing on your treatment. He should focus on improving your life, not milking your money. Grr!
Mama bear coming out for you, Stephanie
PS, You might be interested in this topic that I started:
Endocrine resistance and alternative hormonal approaches
As I remember, the estrogen, like femara/letrazole was also under $20 per month.
Sep 6, 2016 08:39PM zarovka wrote:
HawksFan - Thanks for checking in. So glad that you are doing well. Given the improvement in your overall health, I have no doubt you are on the right track. Please keep updating.
I have continued on the Ibrance/Letrozol regime. for me it has been tolerable. most of the side effects are from letrozol and the lack of estrogen, i believe. However, even my naturopathic doctors prefer i stay on the letrozol .
Sep 24, 2016 04:02PM nbnotes wrote:
hawksfan......what are your blood panels looking like? I had a friend that on ibrance lost the ability to walk, but it turned out that she was incredibly anemic. Having a blood transfusion actually allowed her to see a difference immediately, and she is back walking. Just something to look at/ think about.
Sep 29, 2016 01:29PM zarovka wrote:
sarah - let us know what is going on. is your pet/ct scan scheduled? have you had blood work recently?
remember that being completely sedentary, for whatever reason, will eventually make you very sick. certain body functions require movement. you need to get to the bottom of the walking issues.
thinking of you ...
Oct 2, 2016 09:39AM hawksfansarah wrote:
Talked to the doctor, got my test results.
Bone scan looks "good". CT scan shows multiple (dozen or so) 2 cm nodules in the lungs.
Off Femara. Official, now that I've spent $500 on a brand name bottle. Ironic.
Med change next week to Faslodex shots + Ibrance.
As far as exercise, I am still doing yoga three times a week. Some weeks only once or twice. But still doing it.
Has anyone done this regimen before? My doc says the Faslodex won't take away walking ability. But I've found that a doctor's definition of "walking" and a normal person's are totally different. Any advice?
Oct 3, 2016 01:59AM Heidihill wrote:
Sarah, I am sorry for the news on the lung nodules. There is a thread for Faslodex and I'm sure folks there will have good advice for you. It can be very effective. You are right about the definition of walking. At times I absolutely need my walking poles as a crutch. It's the lack of estrogen, I believe. And Ibrance made it much worse in your case it seems.
Oct 3, 2016 08:20AM Heidihill wrote:
This is a link to the Faslodex thread.
Mar 3, 2017 10:19AM zarovka wrote:
hawksfan - good to hear from you. i am sorry that you are dealing with avascular necrosis, but the surgery, if it comes to that, is pretty routine.
how is the cancer presenting these days? what is your current treatment protocol?
May 19, 2017 09:29AM hawksfansarah wrote:
I'm off of Ibrance. It took away my ability to walk. Right now I am on Faslodex alone. Slowly my ability to walk is coming back. What a relief!
My doctor is doing scans next month. If the disease has progressed on Faslodex alone, she wants to add Ribociclib/Kisqali to my treatment. Any word on that? How are the ladies on the Monaleesa trial doing?
Enough about me, though. How are you??
May 19, 2017 11:10AM S3K5 wrote:
I started on Kisqali/Letrozole combination on 1st April and so far it has been okay. For me, Letrozole is the nasty drug! Joint pain and low back pain is getting worse by the day. Now I am taking it on alternate days and hoping to recover from these aches and pains!
I have had multiple mets to the spine (Cervical, thoracic area) and so far I have been on Ibrance, Affinitor and Xeloda. Kisqali seems to be the easiest of all! Hope you will post your experience with this new drug. I have started a new sub-forum for Kisqali/Letrozole users under "Stage IV Metastatic Breast Cancer ONLY" .
Aug 28, 2017 09:33AM hawksfansarah wrote:
I was on Kisqali for two cycles. It seemed to work better than Ibrance, but then the same side effects appeared, stronger and faster than they did with Ibrance. This was despite going from 3 pills in cycle 2 to 2 pills in cycle 2.
For some reason, I have difficulty walking on Ibrance and Kisqali. My doctors initially said it wasn't a legit side effect, but two years of on and off and they are convinced that those medications are responsible.
That's why they started me on Doxil on Friday. I had a strong allergic reaction (chest pain, inability to breathe, flushed face, coughing), but the doctor wants me to continue with pretreatment (dexamethasone, benedryl and hydrocortisone). Already the nausea is starting. :( Well, if I can still walk, it will (I think..) be worth it..
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