I believe in miracles from hard work - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
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I believe in miracles from hard work

JoyBe
JoyBe

My MBC story and self care program is in my profile. I'm having great success with Ibrance, Letrozole and Xegeva monthly shots. Started Ibrance 3/29/18. I am now my full-time life project and I know I am worth! My successful results are from my personal dedication of hard work providing care for myself. After being a care taker for my mother and daughter, I was blessed by acquiring the needed skills that I am now providing for myself. I am focused and working daily on creating a miracle for healing and making peace with the cancer to gently leave my body completely.

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We are just about the same start for Ibrance, letrozole and xgeva. I started 4/24. Faith, humor and attitude.

Nice to meet you.

❤️

JoyBe
JoyBe
in reply to Snowcone16

Thanks for saying Hi. Yep your right "Faith, humor and attitude."

Wish I could post a heart for you, I'm old school- no mobile phone , grateful for my Mac laptop, that I love :)

Wonderful!! Great attitude! Sending you prayers and positive thoughts! keep going, keep strong. We can all beat this!!

JoyBe
JoyBe
in reply to StE72

You got that right !! We can all beat this for our own long lives and as our support for the next 7 generations! Let's show them how we rocked MBC!

JoyBe
JoyBe
in reply to StE72

ps. thank you so much for the prayers and positive vibes sending them back at you and everyone in this forum!!!

You are an inspiration!! Thank you

JoyBe
JoyBe
in reply to BeckyinMaine

Thank you!! That's the best complement I can ever receive! You know, when I take my medicine with dinner at night which I have learned from experience dinner is the best time to take oral chemo to avoid side effects, I envision my chemo as little light beings bringing a healing vibration into my body to diminish the targeted cancer tumors. And "if" I need a shot for a low WBC count, I envision that shot as fertilizer for my little light beings healing seeds to grow strong to peacefully usher the cancer out of my body. A nurse and I came up with the "fertilizer" role for the shot.

It was her attempt to calm me down and explain why I had to have a shot for the low WBC count form the chemo. I'm a big kid at 60 and I hate needles. All the nurses know it now and look forward to me when I show up for lab work.

Hey, I talk to everyone and I don't care how crazy I sound, they end up loving it and I can see how it shines light into a very difficult job as an oncologist nurse!

Juliandrea
Juliandrea
in reply to JoyBe

Joybe. You are truly a joy. What a uplifting message to read so late this evening. Thank you, I have the same attitude most days, but some, not so much. We all need to read your post when we need it. Thank you for being you. What injection do you get when your wbc’s are low?

JoyBe
JoyBe
in reply to Juliandrea

Thank you for appreciating my optimism, it truly means a whole lot!

I get the Filgrastim shot. The print out they gave me about the shot says the US brand names are: Granix, Neupogen and Zarxio. When I do get the shot, I always feel good afterwards.

Send us some tidbits of advice! What supplements so u take and type of exercises do u do? Yoga? Jogging? Swim?

Keep up the hard work!!!😀💕

Well, to address the exercise first. When you have MBC in your bones your continually "at risk" for fractures. After having the fracture that caused my sudden accidental diagnosis, from more like a brake rather then fracture in my left humerus from lifting a heavy chair off my cats tail... there is no way in hell I'm going to place myself at risk for any more fractures.

Hence, I don't have help or support at home, it's just me.

Following the advice of my orthopedic, no I'm not going to a pool or gym to risk getting sick or fracturing anything, period, end of that story. Why? I've heard too many stories of women with the same diagnosis who did not follow the wisdom of not placing yourself at risk for fractures. What happen? they ended up fracturing a rib, vertebrae, hip you name it. Then they died shortly after from complications and depression loosing the will to live.

So I garden in my yard which I love (just tinkering around actuallyhanging out w/ my 2 outdoor cats), I grocery shop and know everyone at all the markets I go to and run errands this is how I plan to stay on this earth for a long long long time.

Between the ages of 16 and 55 I was the most active woman you ever met, who never sat down. I have painted murals outside,had art shows outside, done sweat lodges, Native American sacred fasting and dances, landscaping, internships attending to universities in 2 different states at the same time. Delivered to Time Magazine the very first in vitro baby photos for my local newspaper. Followed monks walking for World Peace taking photos. Geez Louise much more. Ballet, tap, horse back riding,hiking , you get the picture, I've never been comfortable sitting like I enjoy doing now. It's been a gradual adjustment since 2015.

As a single widowed mother of a strong willed, creative highly intelligent daughter with Autism Spectrum I had no time to sit while continually having to advocate for her educational needs. I had to be self employed due to schools constantly calling for me to pick her up, so I continued working as a massage therapist who specialized in deep tissue work on people with real physical pain.

Lots of house calls and back stage concerts, also ran my own business before having to caretake part-time for my Mom. I've lifted heavy equipment and moved just about anything I needed to lift and move.

I went to the YMCA 3x a week doing palates, reclining bike and swimming. I've had a knee injury since I was 14 and it progressively got worse when I injured it for good in 2015.

Personally if your diagnosed with MBC is in the bones, I would say a low impact stretching class would be all I would recommend. If your on a targeted oral chemo like Ibrance which may entail taking it for the rest of your life, I would not place myself in a communal environment to get sick.

I have not taken an antibiotic since 2000 and I don't plan on taking a flu shot. I have kept my liver clean with only taking adderal for my ADD regularly since 2012. Why ? just in case I might need to take a drug to save my life in the future. I had no idea it would be so soon at 60. With that said I take Propolis 1000 1x a day to strengthen my immune system. check out this site:

greenmedinfo.com/blog/7-hea...

I mention all the rest of the vitamins I take in my profile.

I don't work for anyone thank god and I'm living on disability. I will get back to managing my online vintage shop after I fully adjust to my new routine.

I do have 2 cats outside and 3 cats inside that keep me pretty busy and loved.

I do recommend therapy if your in a challenging family life crisis as I have been for the last 7 years. Why? because as you know receiving a diagnosis of MBC is traumatic and it takes adjusting to your new reality. If your already experiencing some kind of trauma your diagnosis can impact your mental health with additional trauma that needs to be acknowledged and supported thru awareness and tools you can learn to manage stress in your life.

Personally, I have always thrived with a challenge, so this level of trauma is familiar to me. No, I don't like it, but I embrace it because it's part of me.

My entire life has been underlined with challenges forcing me to "rise from the ashes like a Pheonix" . I intent to continue rising from the ashes like a beautiful Pheonix with this new challenge too!

I will say I personally feel you have to grab MBC by the horns and ground yourself firmly and positively in your new life. It has helped me tremendously to place myself first as it relates to my needs first, my feelings, emotions, my well being and my health first. No more care- taking of anyone but myself. To be honest, I love my new found freedom and I have no difficulty setting personal boundaries to keep my life clean from toxic people, situations, environments so I can thrive working full-time on my miracle to fully heal my MBC with love, positivity, allowing abundance to flow freely into my life.

ps. For some strange reason my intuition told me to stop eating eggs back in Nov. 2017. Not sure why, maybe I'll find out in the future.

My main focus is keeping my sodium at an all time low. I'm loving the dietary challenge, it brings out a real love I have for good fresh food I prepare myself.

Last thought, I sure would not fly on a plane unless it was absolutely critical. The air pressure and germs for someone with low WBC I would think common sense indicates NO.

Hope I answered your supplement question.

Joy, you are an inspiration. I was diagnosed with breast cancer in 2013,

2 surgeries and then Chemo and radiation for 9 months. I was diagnosed with MBC this past Feb and began IBRANCE 125, Xgeva and Faslodex in April. .Mets in lumbar, sternum and pelvis. I've been dealing with some side effects but overall doing ok. I am very unbalanced when I get up and also have the tiredness, leg and body aches. I still try to keep busy, I'm 70 and I know some of my aches and pains are due to getting older. I'm due for my pet scan in 2 weeks, praying I'm responding to this treatment. Thank you for your post.

JoyBe
JoyBe
in reply to Gibbsbet

I found that the tiredness I felt in the first 2 months was an indication that the Ibrance is working. I sure wish they had the Ibrance sooner for you back in 2013. I avoided/delayed radiation on my fractured arm in order to give the Ibrance a chance to start working. My fractured arm started growing new bone right in the break of the humerus after the first 3 weeks on Ibrance. From there each monthly x ray from the orthopedic looked like someone had "photo shopped" the x ray of my arm.

The bone was growing new bone that became denser with each x ray. So I never needed radiation, because intuitively I knew it would be too invasive for me personally.

Your right about some of the aches and pain being related to age. I have found it's important to keep that perspective.

The light headedness could be from your muscles in your neck being too tight and stressed. Also, you may want to try drinking more water and add a splash of apple cider vinegar and ice.

It will help to alkaline you and you'll feel better.

Keeping your body supported while you sleep by making sure your muscles are completely relaxed and not contracted takes a lot of creative placement of pillows and elevation. When successful, muscle pain can be avoided.

That's my 2 cents.

Sending prayers for a positive scan showing success with the Ibrance.

Remember, it's like loosing weight, you never want to lose weight too fast, you want to lose it gradually so you don't relapse or gain the weight back too fast.

Slow and gradual results from the Ibrance I believe will be gentler on our body for a lasting healing supported by a healthy life style.

Gods Speed Gibbsbet!

Hidden
Hidden

What a breath of fresh air you are. you sound like a seriously fun person and I am feeling motivated just reading your input.

I was diagnosed late in 2013 and had mastectomy and radiation then a small liver met was found in Feb 2014.

The aches and pains? I developed them early in my letrozole years and they never really went away. Currently I am not on any medication at all - tamoxifen, letrozole, xeloda vinorelbine and faslodex have all gradually lost their power (we don't get Ibrance here yet - it is under study! - and other similar drugs are not supported by my medical scheme) So we have decided that, as I am asymptomatic from my liver mets right now, I may as well rather enjoy my life instead of undergoing chemo horrors until I actually need it.

I would love to get more exercise - walking miles is no longer too easy with sore ankles and knees and yoga is only offered at an exorbitant cost around here for some reason. Like you I am enjoying my garden and try to do something creative in it every day - even if it is just chopping off a few dead heads! Otherwise with no gardener and no maid I get enough household exercise and my sister and I do manage to get out to some of the lovely places around our very pretty Lowveld including our belover Kruger Park so can't complain. The only time I start feeling a bit bad is when for some reason I have had an extremely lazy unproductive day - that must tell one something!

Best wishes and keep up the positivity!

I feel ya Izzyf! Your so very blessed to have your sister!

Forget the yoga "class" thing. You can do your own style of Yoga where ever you are ;)

With the right music you can feel insightful guidance on how to move and stretch with your natural body movements.

Damm them for not having Ibrance!

On the flip side...As you know, your always exactly where you need to be, so if you were meant to be on Ibrance it would be available.

Here's an example: My oncologist practice has an in-house pharmacy where I get my Ibrance and Letrozole.

I clearly had a sign I was meant to be on Ibrance when the pharmacist indicated to me that over the last year or so , out of at least 500 patients that receive medication from the in-house pharmacy only 2 people instantly got insurance approval for their medication within seconds after the prescription was requested.

Yep, I was one of the 2.

I hope that encourages you to embrace how your body is communicating to you and it appears you are listening. Which I believe is empowering.

My one suggestion I would like to make is for you to buy some Braggs apple cider. Drink it everyday in what ever you enjoy drinking. I drink it with water and ice.

Also get enough protein in your body on a daily bases.

I'm crazy about this new protein powder I discovered because it's affordable and the original plain has 0/zero sodium and sugar with 24 grams of protein in one scoop.

Here's the link if you want to check it out.

allstarhealth.com/de_p/2521...

I love to do the same thing in the yard, I just got a manual tree trimmer that's easy and great for snipping dead limbs rather then "dead heads" lol I got the pun!

Like you when I don't have a productive day from accomplishing any small task, I feel the same way, But I remind myself of what I accomplished the day before and what I will attempt to accomplish the next day.

Celebrating who you are, where you are and where you have been always makes it exciting to see the surprise of where you will be tomorrow.

Keep on keeping on Izzyf sharing your beauty with nature and all that's alive seen and unseen :)

Hidden
Hidden

Love the Joy! Will try out the apple cider bit - is Braggs a brand local to USA?

Will also continue to do my stretching and twisting too - it does help.

I think we are lucky here in that we have access to plenty of fruit and veg (& I grow a bit of my own too so know exactly what went into it!) and we are pretty good with our daily protein too - fish chicken and lean meat being the most used as well as various pulses - and both of us try to steer clear of as much sugar and sodium as we can. At last food labelling is becoming quite comprehensive. Have not tried any protein shakes though.

As you say -m one has to listen to ones body and otherwise keep keeping on and enjoying whatever it is that wags your tail.

Have a good week

LOL Yeh, Baby..what ever wags your tail.

The Braggs apple cider vinegar is local, I get mine from Food Lion.

Love that you can grow your own, that is definitely the way to go.

Hoping you have many clear night skies Izzy, to make all your wishes on the stars keeping your dreams alive to feed your soul the nourishment needed for continued healing!

I do agree with you and have found that faith and a good attitude makes all the difference. Staying as active as I can also makes a difference and a couple of glasses of wine doesn't hurt either! Hang in there my friend!

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