Why? : I have a stupid question and... - SHARE Metastatic ...

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Why?

Clair19 profile image
51 Replies

I have a stupid question and would like to know why? I was going over my Pet scans. I have Mets to rt lung and some in spine and small lesion in shoulder. How is it every other organ, head, lower abdomen upper abdomen is totally free of any cancer? I mean I know Mets goes to certain places mostly liver, brain, lung, and bones mostly. Why does it mostly just go to these areas. I’m not complaining I just was wondering why this is or do we even know? I mean our lymph system runs all over our whole body. I was just wondering if anyone has done any research on this? Trust me I’m glad it has stayed contained so far, but what makes it just go to these certain areas? I’m just trying to learn this horrible disease. Thanks for who ever responds to this crazy post.😮

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Clair19
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kkrouse profile image
kkrouse

My biggest tumor is sitting on my adrenal gland, so I have no clue. There is some in rt breast, left was removed in 1992, the first time I had this. But they had to biopsy the adrenal this time sine the rt breast didn’t have anything large enough to take.

Clair19 profile image
Clair19 in reply to kkrouse

Wow,that’s not good they left some. I’m curious did they scrape? I just had a lumpectomy so I just know what my friend who had Brac or triple negative which is very aggressive. In fact where they scraped her they thought it came back. So for three months she went through hell until they decided it was not cancer. It’s also rare where you have it. Please keep me posted.

Rhwright12 profile image
Rhwright12

If u find any info let us know...I’d be interested to find out...

Clair19 profile image
Clair19 in reply to Rhwright12

I don’t think the experts even know!

AnnieAppleseed profile image
AnnieAppleseed

I don't think anyone knows. But it is a great question.

SeattleMom profile image
SeattleMom

Hi, Clair! As a long ago high school teacher, I said many, many times, "There is no such thing as a stupid question!" And yours is actually so interesting that it made me start googling. From this website: verywellhealth.com/breast-c...

I found the following interesting paragraph:

"There is a theory that breast cancer may lie dormant in bone marrow, and the bones which breast cancer most commonly spreads to are those which are rich in bone marrow. If you are interested, you can learn more about the theory of cancer stem cells and dormancy as a possible explanation for why breast cancer can hide for years or decades and then recur."

This paragraph sure sparked my interest, as my MBC occurred 17 years after my initial diagnosis. Go to that website; it has a lot of interesting and up-to-date theories.

XO Linda

Clair19 profile image
Clair19 in reply to SeattleMom

Hey Linda, I did read that article many times. I really don’t think they know. Mine was dormant also for 17 years. I guess those with Her2 positive or negative are lucky if I can use that word. One of my best friends at 46 was diagnosed with brac or triple negative. She has been told twice it has come back. They did some digging and decided it hadn’t. She knows it the most aggressive kind and she can’t take what we do as it wouldn’t work. So she would go on chemo, but you can’t do chemo forever. I just pray it never returns.

SeattleMom profile image
SeattleMom in reply to Clair19

Yes, I have the same prayers for my twin sister who was diagnosed with triple negative (primary) about six years ago. She went through all of the nasty chemo treatment; and I pray her cancer never returns! Bless you, Clair! XO Linda

Barbteeth profile image
Barbteeth in reply to SeattleMom

I heard the same..and bone is very vascular..that is it has a very good blood supply..like you my cancer came back after 24 years and in bone

B c

Barbteeth profile image
Barbteeth in reply to SeattleMom

Hiya

I’ve just read that article..may explain mine coming back after 24 years..doesn’t cheer me up though!!

B x

SeattleMom profile image
SeattleMom in reply to Barbteeth

I hear you. Not much to cheer about when you have MBC; my depression sometimes engulfs me when I am laying in bed with thoughts that my life will never return to what it once was. It's difficult to push from your mind when you are taking daily meds and have monthly appointment for labs, consult, and injection. I still haven't quite reached that last stage of grief (acceptance.) Hang in there, Barb! God bless you! XO Linda

Barbteeth profile image
Barbteeth in reply to SeattleMom

Hi Linda

I thought I was coping fairly ok for last few weeks then yesterday I just started crying..great big tears rolling down my face..I think I’d just overdone it..gone into town with a chum for lunch and a potter..it was very hot and I’d walked a fair way and my back was killing me!!!..that sort of thing would never have bothered me 6 months ago but I need to realise that this new ‘me’ can’t ever be the old one

Hard to deal with sometimes..today however I took stronger pain killers..had a short plod on my horse and went to pub with my daughter and felt a bit better..it’s just finding out what I can and can’t do

Sorry for rant!!

B x

SeattleMom profile image
SeattleMom in reply to Barbteeth

Barb: You are describing me to a "T." So far, I have had a few times laying in bed where I have been on the verge of tears and have managed to hold back. Now, I'm wondering if a total meltdown would release some of the grief. I live alone with 3 rescue dogs (one formerly belonged to my elderly mom who was unable to care for him.) Divorced (but in very amiable relationship with ex) and two beautiful adult kids, a son, 27, and daughter, 24. I think much of the grief is always the fear that this terrible disease will shorten my life and prevent me from enjoying all the joys of one day being a grandmother. So much to absorb. Love to you! Linda

Clair19 profile image
Clair19 in reply to SeattleMom

Linda, you touched me with this post. You know I think if we cry it will feel as if we are giving in. However I think we must, I have never been a crier and have not since being diagnosed. I can count on one hand how many times I feel to cry. I’m a very caring compassionate person but don’t like to cry. My husband did when I was diagnosed, but me nothing. I hope you can have a big cry, you deserve it! I hope you feel better if you do. I wish we all could cry together. Please feel better.Leslie

SeattleMom profile image
SeattleMom in reply to Clair19

THANKS SO MUCH, LESLIE! (Didn't realize your name wasn't Clair?) :) How great is this support group? So much help to me!!

Barbteeth profile image
Barbteeth in reply to SeattleMom

Hi Linda

Me again

We are similar in our situations..I live with 2 cats a rabbit 2 horses and a husband

Girls are 30 and 26..one married and 1 just engaged..I’m just hoping to get to the wedding and like you maybe see a grandchild!!.. it’s the uncertainty..if someone could tell me I’d be fine for even 2 years it would be worth the hassle of meds appointments worry etc

Must stop ranting

B xx

SeattleMom profile image
SeattleMom in reply to Barbteeth

LOL!! Had a great laugh over the "ranking" of the animals in your life!! Hang in there, Barb! You are surrounded by love!! XXOO

Barbteeth profile image
Barbteeth in reply to SeattleMom

Well you have to prioritise!!.. lol

B xx

JoyBe profile image
JoyBe

What the heck are "Mets" ? Also, are you saying that the cancer lesions are "only" in your bones? I'm assuming "Mets" is a typo for Meds.

Clair19 profile image
Clair19 in reply to JoyBe

Mets reference to metastatic cancer. Just use the first 3 letters.

Clair19 profile image
Clair19 in reply to JoyBe

How long have you been diagnosed?

JoyBe profile image
JoyBe in reply to Clair19

Short answer: Since the end of March 2018.

Long answer: If you read my story it was an accidental diagnosis from a fractured/broken humerus that happened on Feb. 28th. The Urgent Patient care misdiagnosed me and never took x-rays so I went a whole week before seeing my orthopedic who saw the cancer tumor in the X-ray. It was the tumor that made my bone weak causing the sudden fracture.

The orthopedic flipped out and ordered an immediate MRI.

From the time of his phone call on Friday March 9th saying the MRI indicated I had cancer, I started self advocating and got things moving at lightening speed waiting for no one to call me.

I called them with an urgency like my home was on fire.

Had my first oncology appt. the following Monday on March 12th. Got the Mammogram and Ultra sound done that week around the 15th, had the biopsy the following week.

After getting the results at the end of that week, I was then starting Ibrance and Letrozole that Friday night. Then I had all the scans scheduled in April. No cancer in any blood work. Cancer lesions- I guess you say Mets located solely in my bones. T3, T9 and T10, clavicle, left pelvic,left humerus and 1/5 inch at base of occipital.

Not all over thanks to my Maine Coon rescue Cat Bella. Had she not fatally placed her tail for my chair to roll on it, causing me to lift this heavy chair and breaking my bone, I could have continued on since I had no symptoms and the cancer lesions in the bones would have spread until I had symptoms.

Look say what you will, but cats know they sense the undetectable.

The journey was rough, I had no help and no support, couldn't take a bath for a month, wore the same clothes for 2 weeks. I don't take pain medication so I did very little for the first month due to the pain from the fracture.

Once the Ibrance and Letrozole kicked in, I started growing new bone in my arm right around the tumor. That I think is a miracle, although the radiologist didn't think so.

Well that meant no radiation for this girl because the targeted chemo was doing the job even without wearing my sling.

You have no idea how great it felt to finally have no pain to shower and change my clothes. Slow but I got dressed all by myself.

After you go thru breaking a tumor bone, I certainly will never place myself at risk again.

If that means gaining weight, not flying, not going to there gym so be it.

There is plenty to do, I'm creative and a life long student. Life Long- key words.

Clair19 profile image
Clair19 in reply to JoyBe

Well that’s a very positive outlook, no way I could have done it by myself. With being an R.N I still don’t understand all of this. Yes cats can sense so much, I had a main coon too. I also have it in my spine, almost where you do. I was diagnosed last summer with breathing problems when at the gym. I had no pain in bones, but everyone’s different. I can’t take Ibrance due to wbc. So I just take Faslosex injections, old school med. I’m Her2 Negative, you didn’t mention what form you have. I’m glad you where so presistant, great job! Well I guess now you know what Mets means lol. Hey your just learning and this site is very knowledgeable because they are very smart and educated on this disease. I hope you continue to do well, you seem like a real fighter!!

JoyBe profile image
JoyBe in reply to Clair19

I'm not sure what form I have other then stage 4 MBC that mutated to my bones. It came from a tiny spot under my right breast, but was discovered in the bones first.

I remember my oncologist saying we have to stop my estrogen from feeding the cancer cells with the oral chemo.

So maybe that indicates what form I have.

Just checked my calendar, I started my Ibrance and Letrozole on Monday April 2, 2018.

I started my 5th round of Ibrance and Letrozole last Monday on July 23rd.

My wbc today was unbelievable, it was 5.0 , back on the 16th it was 3.5. My Neu# (ANC) was 2.28 and on the 16th it was 1.50.

Not sure how wbc shot up considering when you start your monthly Ibrance your wbc usually goes down, but hey it's a good thing.

BP today was 120/77.

Just started 2 weeks ago noticing some swelling in my feet when I wake up in the morning.

Not sure yet why, but I'm not in any pain.

My PCP wants to check to see if I'm diabetic. I can extend the bloodwork for that until I resolve a legal case around my corrupt mortgage co.

Just the usual aches from a 2010 injured right hand that gets over used with computer use.

Thanks for the encouragement and reassurance regarding this website as it's the only one I can join because of my time restraints.

Clair19 profile image
Clair19 in reply to JoyBe

Sorry your having problems with the mortgage company, like mbc isn’t enough to deal with. We decided to rent our home because I couldn’t take care when going through chemo for 6 months. Now we love the small condo and very little yard work. I never was a yard person, had it done even when I was young. Sounds like your Her2 positive or negative. That’s the kind that has estrogen that fuels it, why Ibrance works. Your so lucky you have great wbc and Neutrophils, mine went critically low. I had a reduction 2 years ago and everyone seems to think after 17 years cancer free it stirred things up. Doesn’t really matter it’s here. You must work, being a Nurse I couldn’t take chemo and work so I just didn’t go back. I just take care of my kitty’s and my big baby husband. I’m sorry you are going through this but you sound very independent and your on top of your care. Maybe find out what type you have, that’s the first thing my oncologist told me. The reason I ask is because your treatment depends on that. My best friend has Braca 2 or triple negative which if it comes back only strong chemo. It won’t respond to target therapy like we take. Just a suggestion, seems like you are handling things. Good luck with Inrance, your very lucky you can take it.

Clair19 profile image
Clair19 in reply to Clair19

Sorry Ibrance...😁

JoyBe profile image
JoyBe in reply to Clair19

Wow, 17 yrs. cancer free, what a blessing. Speaking of "stirring things up" that's why the tiny spot under my right breast that I refer to as "the mothership" that directed the cancer to go to my bones is not going to be disturbed. I'm in total agreement with that decision the oncologist made.

My oncologist is the Director of our Stem Cell Research Center, I trust and have faith in his decisions regarding my care. Saying he's a genius is a understatement after reviewing is background and experience. He dedication is paramount.

I also think, he keeps things simple for me to understand knowing that I'm alone w/out family and having no support while living on a minimum SSA disability income after 26 yrs. as a massage therapist.

My circumstance feeds my fighter spirit and fierce determination regarding a successful outcome with my MBC.

I still have a whole lot ahead of me to accomplish regarding my daughter and her safety from a Medicaid Fraud case I will be taking care of after I take care of Wells Fargo and Deutsch Bank.

Then perhaps I will have really have a story to share with a larger audience about believing in a miracle from hard work.

Clair19 profile image
Clair19 in reply to JoyBe

I’m sorry your going through this fight alone and on limited income. You sound head strong and have great medical professionals. Just take care of you first, because you need your strength. Good luck and keep me posted on your progress.

JoyBe profile image
JoyBe in reply to Clair19

So far I have the mortgage under control after the law firm for Duestche Bank deceptively place a foreclosure sale date on my home 5 days after I requested a reinstatement quote. Had to borrow a lot of money to wire in order to remove the foreclosure date. I felt like I was dealing with Mobsters.

Still having great success with Ibrance and letrozole with tumor markers dropping (I'm 24.6 points from my goal of 31.3), wbc have not dropped too much. My monthly Xgeva shot is starting to make me feel stiff. I'm starting my 6th month of Ibrance tomorrow. A month ago I started having sudden edema in my feet in the morning. I've gained 13 lbs. in 5 months. My BP is fantastic. However, my MCV and MCH is slightly high so my oncologist assistance placed Macrocytosis under my patient portal active condition. I'm not sure if this is related but my B12 level is high so I stopped taking my B12 supplements to see if the absence shows up in this weeks lab work.

She said it was nothing to be concerned about at this time and that my oncologist will review it with me on my next appt. the 2nd week in Sept.

Clair19 profile image
Clair19 in reply to JoyBe

Glad you are able to tolerate Ibrance! Hope you get your personal life back with your home. I’m back to my normal weight, which all the new clothes don’t fit as well. Are you gaining because of fluid? I have no fluid retention so mine is fat. The only good thing is when I get my Faslodex injections. Glad you got back to me. Let me know how things go with next appointment.

JoyBe profile image
JoyBe in reply to Clair19

My weight gain I think is fluid because the new clothes I bought right before starting Ibrance all still fit. It's on the scale that I see a 3 lbs increase every 2 to 3 weeks. It's been a total of 13 lbs in 5 months. I do love to eat fresh healthy food and my portions are probably a tad large. But hey, it appears eating keeps me from having medication side effects.

Just the recent stiffness from the Xgeva shot the last 2 months is all I have been physically challenged by since I don't have any pain.

I do keep in mind that once the lesions completely leave my bones, I can attempt to gradually be a little more physically active and maybe drop a few lbs.

I look forward to clearing and organizing a bit of clutter that has accumulated in my home from not being able to lift, move or vacuum. I'm looking into getting a quote for some skilled help for that important clearing project.

It's critical to clear since my home needs some repair in addition to a new bed and refrigerator.

I'm basically living in home that became a storage space from my family crisis that was impacted on 6/13/2011 from a Medicaid Fraud case manager who has exploited my only child, my very bright intelligent daughter who had just turned 18 with a developmental delay on the Autism Spectrum.

I want to get the work done to create a new living space I can enjoy and hopefully can enjoy with my daughter since she is my only family. Her father died back in 1994.

That is why I am optimistic about my MBC , clearly I have a whole lot of goals and miracles to manifest on a personal level with very little financial resources.

I honestly don't have the time to fear any aspect of MBC or even the space in my brain to have anxiety. There's too much for me to accomplish.

I look forward to the healing and return of my daughter. Knowing I am her only family where ever she is, since I have not heard from her or seen her since the day her fraudulent Medicaid Case Manager wrongfully abducted her from our home in June 2011.

That is the present crisis and justice that needs lots of prayers for a miracle.

Prayers for my peace of mind, healing for my continual grieving heart and strength to continue praying for her safety as her Mother who loves her dearly that;s what keeps me going and optimistic.

I'm grounded in reality persevering with sheer determination to keep the Ibrance working, staying healthy so I can achieve many miracles.

I have worked hard advocating for my daughter for all those years before anyone knew what Autism looked liked. It's different for every individual and clearly for my daughter who has an IQ of 118. That has made it more challenging when struggling to work with agencies and teachers who are uninformed.

My daughter is now 26 but developmentally she is more like 16.

The last 7 years I have been living in fear for her safety those years can never be replaced.

The reality is she will continue being exploited until I expose the fraud. I'm the only one who can with the help of angel who I have prayed for 7 years will show up as my attorney.

Who knows maybe having MBC will open some door for the support I need to expose this specific medicaid agency fraud cover up that my documents and saved agency emails clearly substantiate.

Can you understand why I believe in miracles from hard work?

Clair19 profile image
Clair19 in reply to JoyBe

I’m sorry you are dealing with such a burden and being so strong. I was reading that you can’t even vacuum? Do you have anyone who could help? Being a Nurse I have seen so much pain and suffering in homes and family situations. I took care of my baby brother who had Cerebral palsy for 12 years he passed away. If anyone ever tried to take him away I don’t know what I would’ve done. I will pray for you and your daughter for a wonderful reunion. I’m married and have a son who is grown. Most of my family passed away at an early age. I have 4 sister in laws whom I love and a father in law and his new wife. Sounds like the Ibrance is working fine for you. I can’t take it due to my wbc always falls so low. I’m taking Faslodex for now until we can figure something for me to tolerate. Keep me posted please and thanks again. God bless you and your daughter.

JoyBe profile image
JoyBe in reply to Clair19

Thanks for the prayers. Please don't feel sorry, there's too much sadness in this world.

Your very blessed to have family support, and I am looking forward to the day I will have support since it's just me here with my 3 cats inside and my 2 outside.

One of my indoor cats just got diagnosed with diabetes, so actually that's a blessing for me. Giving his insulin shots keeps me up early and activates some of my care giving skills outside of taking care of myself. It's good practice in preparing for my daughter's return.

I'll keep you posted.

I hope they can find something soon for you that doesn't compromise your WBC count and that you can tolerate.

Don't forget to work kale, salmon and organic whole grains in your diet they are so beneficial! Enhancing your menu could help shift your chemistry so you might tolerate a new drug that is not too taxing on your WBC and liver.

in reply to JoyBe

Your diagnosis is similar to mine. I have been struggling with hip pain and loss of mobility in my left hip and leg for two years. Blood work and X-ray were fine. Orthopediac surgeon said it was my nerves. Neurologist said no way and sent me for an MRI of my hip and the cancer was spotted. Biopsy showed breast cancer and then they had to go and search for the actual breast cancer. I had radiation on my hip and neck for pain and then Ibrance and Letrozole. I need my hip replaced as it is totally destroyed by the cancer but they don’t want to stop my treatment for me to have the surgery. I just want the ability to walk normally again and to get rid of the hip pain. The rest would be easier to deal with. My Mets (lesions) are on my skull (front and back) spine , ribs, arm, right hip and left hip and femur.

JoyBe profile image
JoyBe in reply to

God Bless you Sarcie,

Damm hip pain is no fun. But you know what, I think it may subside after being on the Ibrance and Letrozole for at least 4 months.

The concern I'm sure you have is while your healing and unable to burn off too many calories there may be weight gain which places more impact on the hips which are weight bearing joints.

FYI, I'm over weight and before my MBC diagnosis I had a goal of loosing weight to avoid the knee surgery my orthopedic doctor indicated I will need in 10 years.

Well, that's not possible at the moment, but I'll take the weight gain and fluid retention with the great results I'm having on Ibrance.

Lesions are diminishing and tumor marker is dropping and WBC is low but steady with no need for a Filgrastim shot. I've only had 2 in 5 months.

Those lesions on your skull can be scary and a real test for you to let go fear. I know since my brain is sacred to me in a major way.

I was scared to death to see the results of my Brain scan. Thank God I only had that 1/5 of an inch at the base of my skull.

Knowing from years of experience fear does blocks healing, so I consciously stay optimistic while embracing all my limitations as gifts that I love.

That attitude and focus keeps me present in the moment.

I know I have Huge ongoing personal challenges outside of my MBC and I am confident and certain they will be addressed and resolved thru my continual trust in the universe .... it's part of the plan... my soul's journey thru my ongoing spiritual quest inspiring my determination to master every lesson along the way.

Loving myself thru self care physically, emotionally, mentally and spiritually helps me to stay out of my own way to ALLOW the supports and miracles I want and am inviting to show up!

This is what I refer to as "hard work", that for me, my hard work generates excitement each day to embrace my life as it is today with joy and love thru all the trauma I have endured, I allow my Spirit to Shine thru because I have always loved to Shine like the Sun ever since I was a baby. My Momma told me so, and her Spirit is always right by my side supporting and loving me.

My 2 cents: Your hips will heals thru your love and support. Get any supports you need for comfort on your journey so you can feel the relief that you deserve.

example: I just bought and invested in a fantastic comfortable chair since I need to sit most of the day for now.

I'm floating in comfort now rather then enduring the pain of the cheap chair I had for the last 8 years.

A new bed is next on my list.

The rest of your lesions will diminish if you keep believing and work hard for healing to take place. Keep mindful to avoid placing yourself at any risk for injury and eat healthy while drinking lots of water.

Keep me posted on your progress.

in reply to JoyBe

Thank you JoyBe. My husband bought me a recliner which has been amazing. I can sleep in it if I have to so it helps a lot. I have been trying to stay positive and upbeat but the last week has really been a rough one. My doctor has been trying different meds for pain and I think all the switching is hard to deal with as each one I hope will be the one that works. One day at a time ❤️

Jerseygirl45 profile image
Jerseygirl45 in reply to JoyBe

I know how you feel. I had rotator cuff surgery in right shoulder May of 2015. Mammo sept 2015. Right arm started hurting Jan 2016 could not lift my arm at all. Could not dress, do hair, etc. orthopedist sent me for x-ray and I had cancer in large part of right humerus bone. Radiation helped me with pain and now I can move it, so I nknow how you felt. I am now having pain in same arm and they are going to try to do radiation again.

JoyBe profile image
JoyBe in reply to Jerseygirl45

Rotator cuff surgery is some serious stuff and it takes a whole lot of time to heal.

1. How come they didn't detect any cancer tumor's in the right arm w/all the x-rays you had for the surgery?

2. What did the Mammo show 4 months the following fall in 2015?

3. Then 4 months later in Jan-2016 they finally detect cancer. I'm puzzled.

Taking Ibrance , helped me avoid radiation.

You know, I had a cranial nerve stroke 5 months before I fractured my arm when they discovered the cancer in my arm. I was seeing double all of a sudden on Oct. 2, 2017 from a family crisis.

As it turns out the sudden shock caused my BP to shoot up . (I'm a steady 120/72, with a low of 110/62 and a high of 129/80).

I was in the hospital for a week getting steroid treatments intravenously every 6 hours.

I hadn't been in the hospital since 1992 when I gave birth to my daughter.

That steroids caused my sugar level to rise and I had to have insulin, hence, more drugs.

When I got the nurse to start taking my blood sample before I ate in the morning I then was able to avoid the need for insulin.

I had a brain scan done then and the cancer in my occipital bone was not there.

(how the cancer wasn't there, then 6 months later was there, I still questioning)

I then had to have a biopsy at the end of the week, to out rule Giant Cell Arteritis, (even thou I only had 1 symptom of GCA- seeing double).

I left the hospital with more drugs then I have ever had in my body and my body was screaming.

The minute the biopsy came back negative, I went right off the prediscone they had me take after I left the hospital.

I started taking charcoal tabs and working full-time to flush all the drugs from my system.

That was a major shock to my body.

I don't even have flu shots due to my reactions and I can't take pain medication for the same reason, my body freaks out.

So, I'm still questioning what all of those drugs might have done to wake up perhaps a dormant cancer cell.

That's why I asked you all those questions about the medical procedures for your arm prior to your diagnosis.

You see my main goal has always been for many many years to protect my liver by avoiding medications by attempting to go as natural as possible no matter how challenging.

If I have to take a medication, I will choose one that processes thru urine rather then the liver, that takes research or asking my doctor.

I also avoid any trauma to my body which I believe radiation does cause a certain amount of trauma to the body in spite of the benefits.

That's why I was so blessed Ibrance did the job.

Like you, yep, it was Fantastic to get any range of motion back in my arm after the fracture. And I must say Ibrance made all that possible.

This is the first time I have been this disciplined with what goes in my mouth, how it's prepared, the science of what's in it, no way would I go out to eat, no way will I eat anything that is a challenge for my body to process while taking my targeted chemo treatment.

And I've got to be honest, I won't even drink 1 glass of wine right now.

I'm on a mission and so far it's paying off in big rewards.

I want to stabilize each and every goal I reach.

I refuse to allow anything to distract me at this stage.

This is my foundation stage, and a strong foundation is critical for my future in my MBC journey, until......... a new targeted treatment is developed that is easier on my liver to continue keeping it healthy. Who's knows, there is only treatment now, but there will be a cure, could be soon and I want to be a part of that possibility.

I hope your free of pain soon so you can get your range of motion back. Remember, it's not just from falling, don't go lifting anything heavy or pulling anything that can cause a fracture, it's how fracture was cause.

Jerseygirl45 profile image
Jerseygirl45 in reply to JoyBe

So sorry for not getting back to you. My husband had a car accident 2 was ago today. No injuries from the accident but doing Ct scan they found a brain tumor. So he had brain surgery and I was running to hospital twice a day. He is home now doing well. A little fuzzy and confused from the meds but getting better. To answer your question. They think I had the breast cancer for the past two s and it was so small it was not picked up. So when I had the shoulder X-rays it was not in arm yet. It must have started spreading after that. I have it in both shoulders, hips, back, pelvis, ribs. I fell in shower on vacation so I thought I hurt the rotator cuff again. But it turned out it was the cancer. My ribs had been hurting for a while too, but I didn't go to doctor until I fell. I saw the radiologist this week and he said he can do radiation again on shoulder, but unless I say the pain is very bad he would like to save that for the future as you can not keep having it. I just started Afinitor this week and he is hoping it will shrink the tumors and the pain will get better. I trust him so I will see what happens. He said we need to save all of our cards until we really need them. Thank you for getting back to me.

JoyBe profile image
JoyBe in reply to Jerseygirl45

Bless your heart, don't give it a thought about delay on getting back. This is really interesting that your diagnosis was from an injury with you thinking it was the rotator cuff. I thought the same thing, but that was no excuse for the urgent care not to take x-rays. If they had the cancer tumor would have been seen a week sooner.

What a strange blessing that was for you husband, just like us, he had a tumor discovered from an accident.

I think that's great advice your radiologist gave you.

That is also remarkable that your Breast cancer was so small it was not seen in a mammogram.

It is fascinating how a tiny spot under a breast can mutate to the bones.

No one is touching my tinny spot under the breast, as they have learned it triggers way too much.

You know I believe it all happens as it is meant to.

I've been on Ibrance and Letrozole since April and I'm on my 5th prescription. My tumor markers have dropped from May 14th @ 97.80 to Aug. 9th @ 55.90. The 2nd Scan I had done in July showed the cancer lesions diminishing as I may have mentioned.

Now I'm just 24.6 points away from my tumor marker goal of 31.3.

It will take an entire yr. for the humerus fracture to fully heal as it takes most fractures the same amount of time.

That's why I refuse to place myself at the slightest risk of further injury. The healing takes way too long.

Wishing you the same progress on Afinitor. I don't know much about that treatment yet.

Also hoping your husband's healing is progressing.

As far as pain goes, allow your body time to rest it really helps.

Jerseygirl45 profile image
Jerseygirl45 in reply to JoyBe

Thank you. My tumor markers when I was diagnosed were over 22,000 now about 780. Were down to 168 then started to rise. That is why they changed my meds. Hope they go down again.

Clair19 profile image
Clair19 in reply to Jerseygirl45

Hey, is that 22k? I guess I never heard of any that high. I wonder if that was a false positive from something? Mine was 817, now 400. That’s why I guess most don’t go by them.

SeattleMom profile image
SeattleMom in reply to JoyBe

Mets is an abbreviation for metastases.

JoyBe profile image
JoyBe in reply to SeattleMom

Thanks!!!!!

I’m not sure why it travels as it does. Mine is all over my skeleton (bones) but I have none in my lymph nodes which is how it spreads. My doctor is confused like I am. Cancer is a strange disease.

Clair19 profile image
Clair19 in reply to

That’s why it’s so hard to treat. They are now saying it can hide in bone marrow, it’s sneaky like that. That’s just something I was reading. I mean like mine and a few others who didn’t have it return for 17 plus years. I know one lady 28 years later. I mean that’s crazy, that tells me they need to research that further.

in reply to Clair19

My issue is that I was never diagnosed with breast cancer before in my life. My hip was bothering me and the biopsy on my hip showed breast cancer and then they had to go search my breast for the cancer. They found a 3 cm spot in my right breast in a duct. It was strange.

Clair19 profile image
Clair19 in reply to

I just saw this, so you where never diagnosed? Did you have regular mammograms or do self examination? Sorry for all the questions but I never heard the way they found it, had to shock you. So many people fall or break a bone and find out it’s mets to that area but already had bc. I hope you have a great outcome and keep me posted. I will pray for you.

in reply to Clair19

I had regular mammogram, etc. Even after my biopsy on my hip my doctor couldn’t detect a lump and it took two diagnostic mammograms to find a 3 cm lump in a duct. It was definitely a shock. I thought I needed a hip replacement and never once thought of breast cancer. Thanks for the support. All of you help with your posts and comments.

SusieIM profile image
SusieIM

No such thing as a stupid question here. I don't know the answer to why cancer tends to grow more in some areas than others, I wonder if anyone knows. Take care.

Clair19 profile image
Clair19 in reply to SusieIM

How true and why it stays away so long for some? Why come back after 28 years....Mine almost 18 years. When are they going to find that out. Because when they finally figure out where it hides they could zap it off or out. Probably like finding a needle in a haystack. If they could find that out just think how easy to either use radiation or remove it. I’m hoping for some in the near future they will be able to find its hiding place. I don’t think it just comes back, I have always thought it lays dormant. Anyway if rambled enough. Thanks 🙏

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