Women with bone-only metastatic breast cancer- do you see this as a chronic disease?

[Jac-genova]

Just curious how long some of you women who have been diagnosed with bone-only metastases have been living with this disease. My mom's oncologist described it as a "chronic condition" that needs to be managed. She's currently taking letrozole and xgeva shots. She has 2 tumors in her spine - l4 and t2 regions

[JEY1]

I have Stage 4 that went to a place on my sacrum and was told it was a chronic condition. Am wondering why radiation couldn’t get rid of the spot. I am on 100 mg of IBRANCE and may have to go to 75 mg and Femara. What are xgvea shots for?

[Zebra2018 in reply to JEY1]

Xgeva shuts are for bone strengthening.

[JEY1 in reply to Zebra2018]

Thanks!

[AuntC in reply to Zebra2018]

Wish I could get Xgeva shots but copay is almost $500 and just can't afford it. I'm getting Zometa infusions instead and they make me feel sick for a few days after.

[Zebra2018 in reply to AuntC]

What kind of insurance you have? Medicare covers it 100%

[AuntC in reply to Zebra2018]

I do have Medicare but also carry a supplemental plan, like a senior advantage plan and it only covers 80%. Are you only on Medicare? I'm in Calif what state are you in?

[Zebra2018 in reply to AuntC]

I am in Virginia, I have Medicare and Aetna insurance as supplemental. I don’t pay anything for xgeva or faslodex .

Medicare covers 80% and Aetna pays the rest. I pay almost $700 Each month for IBRANCE though.

[AuntC in reply to Zebra2018]

Thanks so much for the info, I'll check with Medicare. I don't pay for Ibrance. If you qualify on income Pfizer has a program to help here's the number I call 1-877-744-5675. Good luck, $700 is more than I could ever pay.

[Zebra2018 in reply to AuntC]

Thank you for info and good luck

[Zebra2018]

I have bone met to c4 on my neck. My onc also told me that with the progresses in science and med, stage 4 BC is not a death sentence any more, and we consider it as a chronic disease like diabetic.

Good luck to all of us

[JEY1 in reply to Zebra2018]

Thanks for sharing! I have been thinking the very same thing!

[Rhwright12]

Yes...4 years in on Herceptin/Perjeta and Zometa and Zoladex and Arimidex.(Bone only) But yea! I work full time and am planning another Disney vacation next summer...I go every other year...Thank God this was the off year! 😱🤣😂🤦‍♀️ But yes plan your life as if you’ll be here to live it...😁

[Maludagui]

Me too. I have 21 month on Ibramce 125 - Letrozole - Xgeva - Zoladex. Happy day

[Hidden]

Hi,

I view this disease as a chronic condition. It's how my oncologist described it when we met for the first time, and that helped reassure me. I've been stable on letrozole, zoladex and zometa since I started treatment in May 2018. But I have also added some alternative treatments that may have helped improve my health.

Sophie

[Jac-genova in reply to Hidden]

Thanks Sophie! What types of alternative treatments? I'm aware of several but am having difficulty having my mom pursue some as insurance doesn't cover it. Also do you get petscans every 6 months? do you do anything to help get rid of the radiation post-scan?

[Hidden in reply to Jac-genova]

You're welcome. I take of-label drugs, supplements, exercise most days, watch my diet, get plenty of rest and try to make sure I get between 8-9 hours of sleep each night. I've only ever had one PET CT scan, and that was in May 2018. I asked for another one a while ago to see how I am doing and my oncologist refused to order one. So I am considering asking again or going private. I'm not sure what you mean about getting rid of the radiation post-scan.

[Jac-genova in reply to Hidden]

I know petscans have a lot of radation, so I wanted to know how you help detox your body from it. I've read that bentonite clay can help post-scan when used in a bath. I have my mom on turkey tail mushrooms, curcumin, fish oil, probiotics, beta-glucans, melatonin, vitamin d & k, and magnesium. I also am trying to get her an infrared mat

[Hidden in reply to Jac-genova]

Oh, OK. I see what you mean! I think that would be a good question for your mum's integrative doctor. It's not the same thing, but I add Epsom salts and essential oils to my bath every night, which contains magnesium, and I take melatonin, curcumin, vitamin D+K2 and many other supplements.

[Nmartinez15]

I have only on t6 for now. I am having ct scan and MRI next week. I am hoping there is not progression.

[Gramat in reply to Nmartinez15]

What treatment are you on? I was diagnosed with solitary secondary on t9. On letrozole and Ibrance since February. Today had first pet ct since starting treatment. Results tomorrow

[Nmartinez15 in reply to Gramat]

Letrozole, xgeva, ibrance

[Gramat in reply to Nmartinez15]

I am on letrozole and Ibrance. Had one shot of Xgeva but did not tolerate well. How long have you been on this treatment and have previous scans shown good results from it?

[Nmartinez15 in reply to Gramat]

I am doing okay with Xgeva since the Doctor told me to take Vitamin D2 50K units weekly. I didn't do good with the other shot. I can't remember the name, but I got really sick and I was constipated for a month! I have been in this treatment for over a year. All my scans show not progression. I got my results yesterday from the last one and everything still stable. I also take several natural supplements in that way I don't feel so much fatigue or tiredness.

[Jac-genova in reply to Nmartinez15]

what supplements do you take?

[Nmartinez15 in reply to Jac-genova]

Colustrum, magnesium, calcium, vitamins D, ashawgang, mushrooms complex, harvest bounty (contains alot greens)

[Gramat in reply to Nmartinez15]

I had Pet/CT which showed no evidence of active disease, I am in remission .

[Nmartinez15 in reply to Gramat]

That's awesome. I always get scare when I get schedule for the exams. Once they come back good I can relax for 3 months!

[Gramat in reply to Nmartinez15]

Thanks. Next PET/CT next February. The hair shedding is really affecting me. It is shedding all the time. When will it stop and will it regrow?

[Nmartinez15 in reply to Gramat]

My hair was shedding at the beginning for almost a year and super dry. I don't know since everyone is different. Like I mentioned before I take a lot supplements and I don't know if thats the reason my hair is not falling like before. Something that I do know if you vitamin D is low you will have alot lost hair!!! It did happen to me in a period of time but it stop when my doctor prescribed the D.

[Gramat in reply to Nmartinez15]

I do take Viviscal supplements and had been taking Vitamin D 3, I will recommence this. I have also gained 5kg which I cannot shed.

[Nmartinez15 in reply to Gramat]

He gave D2 but honestly don't know the difference between D2 and D3. Lets not talk about weight! I gain like 7 pounds and i cannot shed either! Its horrible! I used be size 6 and I never before have so much hard time to lost weight like now. But since they removed my ovaries and start taking letrozole and ibrance I can't lost one pound!

[Jac-genova in reply to Nmartinez15]

Which supplements do you take?

[Nmartinez15 in reply to Jac-genova]

Colustrum from 4life products, magnesium, calcium, vitamins D, ashawgang, mushrooms complex, harvest bounty (contains alot greens). I have other ones too.

[Kimr2081]

I was never really told it was a chronic condition but I figured it out pretty quick. My ordinal dx was in 2002 then found it my hip in 2006. For the next 11 years I had a shot of faslodex monthly and during those 11 years had an IV of something like Zometa for 5 of those years. Easiest treatment for me, no side effects at all. Oh and I did have 20 days of radiation initially. I hope your mom has an east time with it and it remains under control. My is now in liver. Ugh.

Best,

Kim.

[Jac-genova in reply to Kimr2081]

Thanks Kim, I hope your health improves too! Were you ever on letrozole and did you get petscans every 6 months?

[Kimr2081 in reply to Jac-genova]

When I was just on the faslodex I only had a Petscan once a year. When the cancer came back again to my liver I started on Ibrance & Letrozole and was having a CT scan about quarterly. I have since been on a few treatments still with scans frequently. I am on Taxol now and go for scans about every 4-5 months.

[Jac-genova in reply to Kimr2081]

Ok, makes sense! Thank you! Wanted to share this with you:

wellthoughts.org/an-integra...

wellthoughts.org/the-best-a...

[Kimr2081 in reply to Jac-genova]

Wow. Thanks for this information. Some of the supplements I have but haven’t been using. Going to talk to my doctor about some others.

Thanks again for sharing your research. 🙂🙂

[DianaTrapani in reply to Kimr2081]

11 years is amazing! Thanks for sharing.

[SeattleMom]

Hi, Jac!

I've been on the Ibrance/Letrozole combo since November 2017. My metastases were in my spine and one pelvic bone. I'll never forget meeting my oncologist at the Seattle Cancer Care Alliance. She told me that I would likely die in an auto accident before succumbing to MBC. LOL! I guess it was her way of telling me that my disease was, in effect, a chronic condition. I am, however, very careful when I'm out driving!

Love, Linda XXOO

[Hidden in reply to SeattleMom]

Hi Linda,

I wouldn't want to die in a car crash either! I survived a car crash and bus crash and was almost hit head on by an ambulance answering a 999 call not so long ago. But I can see where your oncologist was going with the analogy! How about dying peacefully in our beds at 100?! Can't they say that instead?!

Sophie

[Hidden in reply to Hidden]

As you know they never commit to time left. Wouldn’t 💯 be nice. Especially if we have all our marbles xxxx

[Hidden in reply to Hidden]

Yes, that’s true! I still don’t like the car crash analogy though. I don’t find that reassuring, having been in that situation. It’s scary.

[Jac-genova in reply to SeattleMom]

So glad to hear that do you have petscans every 6 months?

[Jac-genova in reply to SeattleMom]

Thank you Linda!!

[Hidden]

Hi, I have mets in my lungs and bones. It was classed as a Chronic Illness that could be controlled. I was diagnosed December 2018.

I have a CT scan every 3-4 months. I speak with my Oncologist every 3 months.

I take Letrozole and Ibrance and have a Denosumab jab every 3 months (was once a month until the virus kicked in) to strengthen bones. I take prescribed Calcium and D3 vitamins. I take a spoonful of Manuka Honey (New Zealand one) every day. It’s natural with antiseptic qualities. It’s great for mouth ulcers that can occur from Chemo.

Personally I wouldn’t take any supplements without consulting the Oncologist first.

Hope this helps a little.

Best wishes.

[Jac-genova in reply to Hidden]

Thank you!

[Iwasborntodothis in reply to Hidden]

This matches my diagnosis and treatment I am month 11! I feel pretty darn good.

[Buffwright]

I was diagnosed with spots on T6 and femur . I had Zometa infusions (with Ibrance and Letrozole) for 3.5 years, which did away with those spots, til new ones appeared on T1 and hip in March. Started xgeva with Afinitor and exemestane in March, and the new spots are gone.

[Buffwright]

Is it a chronic disease? In a way, but all treatments are still considered palliative care. I trust that a series of treatments will take me at the very least to my 4th grandchild (I have one now, born 5/7).

[SusieIM]

I don't like to see it as a chronic condition, but according to the medical profession it is. Prayers up for your mom.

[Dawn53094]

I don’t want to be the bad news bearer, but I must. If this is Chronic, why are we continuing to see so much death, in less then 3 years? The statistics are changing, but we still have to much death. On the good news side, I hit year 9 in Sept. Bones only. My oncologist has told me, in my bones, from neck to feet. He’s also said it’s the goal to make it Chronic.

[Hidden]

I was diagnosed de novo in December 2017. I DONT see this as a chronic illness because one can live with a chronic illness and it doesn’t alter your life much. Diabetes and asthma as two examples are easily managed. MBC has changed my life dramatically and my quality of life has suffered.

When I was diagnosed my left hip was already destroyed and had to be replaced, I had mets to my skull, neck, 3 spots on lower spine, both hips, both femurs. Since then and after two rough years of taking Ibrance and Letrozole (exhausted and neutrophils dropping to 0.3 most months requiring a three week break) I had progression and have had to switch to Chemo. There are few bones not affected by my cancer. I’ve struggled to get my pain under control and I still walk with a cane. I can’t do much of anything due to the Mets in my right hip and both shoulders. Going back and forth to chemo on top of the restrictions I face all add up to me facing this as what it is - cancer.

[Jac-genova in reply to Hidden]

Praying for you