My Story - Widespread Bone Mets

cheriee

Hi, everyone this is my first post. I was just wondering if anyone else out there has widespread bone mets and how they are coping with it? I have mets down my spine, ribs, hip even one in my right toe and one on the top of my head. My ribs are painful sometimes when I take a deep breath in or lie on something hard. But I cope with it and its really not that bad. My last scan showed that I was "stable"... . I wasn't going to do the whole "This is my story thing" on here ... . but now I've stated I don't think I can stop. So sorry everyone but I think you are a great understanding group of people.

I had a sore hip / inner thigh for a while. Went to Physio for several weeks with no improvement. Had a hip xray which was clear and I was also checked for an inguinal hernia. At this time I could hardly walk, I had a bad limp and could just manage to lift my right leg off the ground. Honestly, sleeping and getting in and out of bed was terrible. It would take me several minutes to maneuver myself in and out and turning over was just as bad. So I resorted to using a crutch to relieve some of the pain and later moved onto a walking stick. To crouch down and then get up was impossible I had to go on all fours and get up that way. Physio continued with no improvement so the Doc sent me for a lower lumber CT scan.

So on the 5th Aug 2010my Doc gives me the news that the scans were consistent with metastatic disease in multiple parts of the lower vertebrae. A further mammogram, CT and bone scan confirmed breast cancer with 2 tumors and many mets mainly in the spine, hip and ribs.

"I am a believer in that things happen for a reason. Sometimes we will never know the reason. Even though I'm not happy about cancer - I do try and be grateful that it did not happen when I was younger, when the kids were small as I wouldn't even be able to pick them up."

So the next few days were taken up with tests, scans etc. They found several breast lumps HER2+ and widespread "hot spots" - mets on the vertebra, tip of each shoulder bone, problem one in the hip, one on top of the head and a few spots in other places. So lifting things and walking at this stage was a big problem. Now I suppose I am lucky in that I work from home (we have an Ebay business) if this wasn't the case then I defiantly would have had to give up work as it would have been impossible to get to work and walk around or lift things etc.

"Getting cancer must be unbelievably difficult for people alone or single parents, it would be so, so hard being in an empty house - I take my hat off to those people."

12th Aug 2010 was the first day of treatment: Monthly - Zoladex - Hormone treatment and bone strengthening IV infusions to strengthen the bone and reduce chances of a break. This went on for a few months and I had radiation to the hip area for 5 days. This worked wonders. Presently I am being treated with Arimidex, Herceptin and still Zoladex and Zometa. I had a 6 week course of Taxol so I would qualify for free Herceptin (in Australia it is $70,000 otherwise).

Presently I am doing OK - I can walk again and do 30 mins of aerobics every 3rd day - I believe this has helped my mobility immensely. I am not having chemo presently and my last lot of scans showed I was "stable". I obviously have advanced breast cancer but my condition has improved drastically from when I was first diagnosed - so I am grateful for that.
Sometimes I feel sorry for myself but try and remember there are many people worse off like the souls who instantly lose their life in accidents, or who are murdered, left with severe disabilities, have strokes or heart attacks or those who are on dialysis and have only months to find a kidney. At least I have time and maybe many, many years. I think you have to have a positive attitude and try and be content with what life bestows on you.
My husband has left his full time job (he didn't like it anyway) and we have expanded our Ebay business to make up for his lost income. So I handle the purchasing, listings, financial issues and he does the packing and heavy lifting. So far so good.

So that is my story, and getting back to my first question - are there many out there with similar bone mets - I would like to hear and read about your experiences as I have not met anyone with similar problems. Thanks for listening.

Groovywilma

My PET report reads:  There are innumerable hypermetabolic skeletal lesions involving the entire spine, multiple ribs, sternum, skull base, pelvis and femurs.  Sucks!!!

I just got diagnosed in January 2011 but through most of last year (and especially towards the end of the year) I was having lower back/ hip pain.  Similar to you, my main pain was in my right hip, and in my left groin area and this caused me to limp and walk funny.  I went to physical therapy with only minor relief.  Found out in January that it is cancer hanging out in my bones!  

In October I had this sharp pain in my left side.  I went to the doc who said it was possibly a rib sprain (even though I did nothing to cause such a thing).  In retrospect, I think I know what it REALLY is now!

I still have the pain in my hip/ groin but it's not too bad.  I can't walk as far or as fast as I used to, but for the most part it is manageable with ibuprofen.  I have vicoden also but that does not really help.  We haven't done any radiation at this time because the doc says the cancer isn't in any real solid places at this time for it to be effective.  

So for now I am on tamoxifen and monthly zometa.  I hope that this works and shrinks all the cancer so they shrivel up and go away! 

Best of luck to you!    

chele

Mine is nowhere near as extensive.  Welcome to the stage IV forum.  I just got here myself.  These ladies are all great.

AussieSheila

Hi Cheriee,

                 my history is much the same as yourself.  You didn't say whether this was your first dx or progression from an earlier dx.  I have mets in skull, shoulders, ribs, hip, pelvis, knees and feet.  Although I was dxed with mets in '08, I think it had been lurking around for about 5yrs.  Like you, I was virtually crawling around with the pain in hips and legs believing I had the arthritis that my GP had dxed from an X-ray.

After an X-ray, my new GP sent me to an Orthopaedec surgeon because there seemed to be something on my spine.  He ordered a bone scan which revealed all my hot spots.  My onc said that I would not be having chemo or radiation but that I can be 'managed' for a long time with Bonefos (clodronate) and Arimidex.  These meds reduced the pain levels and the size of some of the mets but they flare up every so often and then I hit the heavy pain meds.  Most days if one area is telling me off, I take 600mg of Ibuprofen or two aspirin for a few days and it eases off for a while.

Dec '09, 14 months after dx, Onc ordered a bone scan and I was 'ordered' to get to the hospital in Brisbane (4hr drive) as soon as possible, never mind that it was two days before Christmas.  I had to have an MRI as I had a new spot on my neck and was told that they didn't know if it was cancer or arthritis.  When it was all over they admitted that they thought the new growth may have gone into my spinal column and that's why they panicked!  I went from expecting to spend two weeks in hospital to returning home that night.  Three weeks later, I had ten hits of rads to relieve the pain which I had believed was caused by a stiff neck. 

I was first dxed in '95 and as the years wore on I believed that I had beaten the BC b!tch.  When I went to see my Onc in September '10, she ordered a bone scan the results of which I didn't hear until my Dec app't.  She asked me when I had broken my rib and it suddenly clicked that I had had a painful right side for a few weeks in Oct & Nov.  Apparently, that last scan showed a rib that had healed.

About four weeks ago I went to take my 5 month old grandson from his father and as I lifted my arms to take his weight, I  felt like I had been stabbed in the back.  I suffered the same pain I had had last Oct so, I presume, that I broke another rib or the same one again.

It seems that taking the Bonefos for two + yrs has made my bones quite brittle and now I have to watch every thing I do.  I believe it's a bit strange that Bonefos is given to older women who have osteoporosis to strengthen their bones, but I wonder how many of them suffer from bone fractures after they have been taking it for a while.

 I must say that I am a lot more suspicious these days of any new aches and pains and, even though I have had three birthdays since this ABC dx, my veil of denial has been lifted and replaced with the shroud of reality to some extent.

I don't know if this will help you in any way, but that's how it is for me.

Sheila.

JeninMichigan

Hi Cheriee

Welcome!   I do not have widespread bone mets .. just a few left hip and ribs.  I also have liver mets.  I am sure getting the results of your scans was so overwhelming for you.   I recall the day hearing my first oncologist say while shaking his head that my pet scan changed everything for me ... he said "it is everywhere".  I see you are HER2+ also.    I did 6 cycles of Taxotere, Carboplatin,  & Herceptin along wiith Zometa in 2008.  I was NED (no evidence of disease after 3 cycles) and have remained that way every since.  I am still on Herceptin, Tamoxifen and Zometa (well Aredia).   I also did a year of Tykerb in 2009 just for fun.   Are you still on Herceptin?   My opinion, I think if you responded to Herceptin it is important to keep taking it.  I know I will be on it forever and am hopeful that forever is a very long time for me.    Good for you exercising!!  It makes you stronger and helps with all the stiffness that comes with this awful treatment.   Do you take calcium and Vit. D3?   The zometa really sucks the calcium out of my body and I felt so much better after starting 1800 mg of calcium and 2500 mgs of vit D3 every day :-)

Wishing you all the best.

Jennifer

mnmom3

I also have multiple bone mets in my spine, sternum, ribs and hips. I had a lot of trouble with mobility, and pain when I was first diagnosed, but that has resolved. I have no bone pain now. I am currently on TCH and Zometa and we are seeing good results. I am in awe sometimes at how much better I feel since diagnoses.

If it wasn't for being bald, I actually wouldn't believe I was sick.

Best of luck

Marsha 

3rings

So sorry you had to join us Cheriee, but glad you found this group, there is a wealth of knowledge, compassion and good humor.  I too have bone mets, bone scan lit up like a Christmas tree, as they say.  But, I'm stable my first line of treatment was chemo (i have mets to my lung, liver, lymph nodes too) 6 round of AC and T with Zometa.  That didn't do much for my bone mets but reduce the caner everywhere else.  I then went on Anastrozole (I'm ER+) and still get Zometa once a month, with this i have had some regrssion and healing of some bone mets.   It is very hard to get your head around your new normal, it's great that you work from home and have support. It's a long road and we all need to lean on someone, let this board be one of those lines of support, now one understand like us!

ibcmets

Cheriee,

I was diagnosed with inflammatory bc with spina bone mets from the start in 6/09.  Chemo  and Zometa worked well and after a year being stable; I just had a BMX.  I do zometa monthly & Femara daily as I'm ER+.  I've done well on treatment, though my lower back is starting to hurt everyday again.  I guess I'll see what's up on my next scans in a couple of months.

Terri

patpet7

I was diagnosed with extensive bone mets right out of the gate.  My hips and lower back give me the most problems.  I had pain in my hips in 2007 but bone scans showed nothing.  They didn't discover it until bone scans were done in 2009 when I was diagnosed as stage iv.  Some days I can barely walk and others I do okay.  But I never feel good anymore.  And I'm never without pain.  I have a high tolerance for pain but it does make me irritable.  This is as good as it gets, it seems.  And I want to live my life to enjoy the things I love and not waste any of my precious time or energy.

Teen22

Curious how all of you are doing? After 3 months of back pain, chiro visits and NSAIDs...I finally agreed to a CT scan. It showed "widespread lytic and blastic lesions in spine, bony pelvis and ribs". I have an appointment this week for a Mammogram and Breast Ultrasound as I have a mass on my right breast which they suspect is the primary source of cancer. (I don't know what type cancer I have yet).



I do not want any chemo nor do I want to subject myself to radiation. I believe these treatments will only extend my life for a couple of months longer. I seek only palliative care and would like to pass with dignity.



I am presently taking only Tylenol with Codeine every 6 hours...in time, I realize this will not work anymore to alleviate the pain. I will consider bisphosphonates but that's about it. PAIN MANAGEMENT and palliative care is all I want. Why is it so wrong to decline other treatments?



Is there anyone still out there that I can talk to?

blainejennifer

Teena,

You need to read around this site. Radiation isn't painful - so you won't be subjecting yourself to it - honestly. It's tedious, more than anything. And, chemo ain't bad. I did a year of weekly Taxol and managed to run my life quite well. So, you don't have to worry about quality of life. It's truly possible.

That being said: this is your disease and your life. You have the right to handle this cancer however you please. But, thanks to improvements in chemo protocols, it is quite doable. You may find that you are hormone receptor positive, and manage your disease for years with a tiny daily pill.

There's not many of us that faced our diagnosis with capitulation. The very nature of this site seems to call to the fighters, and we gather here to support each other. And I support you in whatever decision you choose, but you may not find many who have made the same choice.

Just re-read your post. Treatments can extend your life for years, not months.

Let us know how you are doing.

Teen22

Thank you Jennifer.....I finally cried after reading your reply. (I have been stoic and numb after I was told that I had widespread bone mets and frankly, my first order of business was to discuss and handle my affairs like life insurance, filing for disability, estate planning, etc.)



I don't know much on what to expect...except that I have seen my sister die from BC and I don't like to have to go through the same sufferings she went through.



My thoughts are, since there's widespread bone mets (not even sure what other organs it's metastasized to since I only had an abdominal/pelvic CT)...the illness is too far gone? TBH, I would prefer to just be put in a "sleep induced" state when the pain is no longer tolerable.



Right now....my mind is soooo tired from thinking. Thank you for holding my hand.

blainejennifer

Teena,

Last year, in August, my rib cage lit up like a Christmas tree and my tumor markers were 2,600. Umm, normal value is less than 30. I couldn't get out of bed without pain, as my ribs were breaking.

This August, I have no lesions at all, according to the latest imaging, and my tumor markers are at 50. I did about 9 months of weekly taxol and am now on monthly infusions of Zometa ( and have been all along) and monthly shots of an anti-hormonal called Faslodex. My garden kicks ass this year, and I can walk my crazy dog without cursing. Well, normal levels of cursing, but last year, it was epic. She still pulls hard on the lead when she sees a bunny.

You are not your sister. Her path is not your path.

Listen, all we humans know we are going to die. We bc sisters just happen to know how we are going to die, and have a firmer grasp of it being sooner rather than later. That sucks. But, while we are here, we can enjoy our lives, and when it comes time to go, fire up the morphine drip and let's do this thing. I agree with you there.

And, not for nuthin, but any Oncologist that tells you to get your affairs in order, unless you are bleeding out in front of her/him, deserves to be your ex-oncologist. Mine looked at my baaaaad scans and said that he was "concerned", but that he was sure we could fix this. Now, that's a bedside manner, baby.

Sounds like you are diagnosed Stage 4 right out of the gate with no previous diagnosis or treatment. Man, you guys respond the best to treatment, as your cells haven't been exposed to chemo before (termed "chemo-naive"). Those little cells just lay down and die for the chemo naive. I'm a little jealous. Tumor burden isn't a huge concern anymore - response to treatment is.

Let us know how things are going for you. Seriously, when you get a treatment plan in place, you will feel tons better. Pinky swear.

justjudie

I have extensive bone mets too and the pain is really quite bad most of the time.  I have had to have rads first to neck vertebrae  as docs were afraid they were about to break.  Then the lower back needed it as I was hardly able to move.  Now we are radiating thoracic region as well as my collar bone because the cancer has eaten right thru my collar bone in two large places and believe me please.....that hurts.  I think I have done about 2 weeks now of these rads and I have to say today was first day I am feeling some relief.  I also have "innumerable" lesions of cancer in my lver but as yet no pain from that at all.  I just hope that won't be as painful as the bone mets are.  I was on monthly Aredia infusions but my onc took me off when it was 3 years into getting the infusions due to the jaw problem being a possibility.  I wonder if that may have made the bone mets wrse, not getting the bone strengthening drug anymore?

I also ave a number of broken ribs too.  Front and back.  Man, they also hurt.  I am on plenty of pain meds as you can imagine.  But rarely have what you would call complete relief from pain.  

Just thought I would commiserate with you as I know how you are feeling.  Welcome, Sister. 

SonnyB

Teena,

I had back pain for over a year that I tried to take care of with NSAIDs and a chiropracter.  Then I found a lump and a few weeks later a PET showed extensive bone mets.  I had radiation to one spot that was a risk to the spine but otherwise I have only been on Tamoxifen with shots of Xgeva (bone strengthener) and Lupron (supresses estrogen).  It has been almost 1 1/2 years since my dx and I feel really good.  My back pain diminshed over time and my only side effect is hot flashes.

Everyone chooses their own path but I would say it is worth it if you are ER+ to try hormonals.

Sonya

Teen22

Sonya, my sister who had BC took Tamoxifen as well. Does that mean that she was ER + ? I remember she disliked the pill because it caused her to bloat and swell up. I am not exactly sure what type BC she had (she lived overseas during her illness). I just remember she took Tamoxifen. Does that mean that I most likely have the same type gene?



P.S. I can't believe your story is similar to mine....I look forward to hearing from you or anyone. This site helps me quite a bit. Thank you all...

Gtiger

Teena,

I was first diagnosed with BC in 1997 with a 5 cm tumor and 1 positive node. I did a year of aggressive chemo but no radiation. During that time I too had a sister diagnosed. We both tested positive for a mutation of the BRCA 2 gene. I took care of her until she died 5 years ago while I remained cancer free until October 2011. In Oct. 2001, I was diagnosed with bone mets to my spine and left shoulder. I received radiation and was on femara and xgeva until June of this year when I had further progression to my spine. Radiation was wonderful and got rid of all of my pain. I am unable to take any narcotics so I was so thankful for the radiation treatments. The femara and xgeva was effective in preventing progression for almost 2 years! My quality of life has been good enough! Since the new lesions on my spine which were diagnosed June 2013, I have been placed on Afinitor, Aromasin and continue to receive monthly Xgeva injections. I can't say that it's pleasant but I'm willing to move on to anything that will fight this disease. I wish you all the best with your choices.

Teen22

I have my first Onco visit tomorrow at 7:oo am and I need help on what questions to ask please. Priority for me is my prognosis, and to determine if I would like to proceed with Chemo or Rads. I seek for quality of life even if it is short....

chele

Teena, I'm still here, and still doing great! 

I had quite a bit of progression during the first two failed chemo attempts, but my last scan showed healing.  I had a year long run with Navelbine then so far about 8 months on Xeloda. 

Radiation to T9/10 was no big deal, just a lot of driving since I live an hour away.

Chemo has been easy.  I have not lost my hair again since my initial treatment for stage IIb.

blainejennifer

Teena,

Until you get the results of a biopsy, no one can be certain of your prognosis or even your treatment path. Let the Onc know that you value quality of life, so that s/he knows you'd like to start with the gentler options (antihormonals, oral chemotherapies) rather than the harsher chemos. Actually, I can't think of any truly harsh chemo - all the side effects can be managed so well nowadays, and if they can't, you just move onto another treatment.

Thought of one: doxil can be tough, and hard on the heart.

I have a feeling that you are the kind of person that benefits from information, so keep reading. One thing you shouldn't do is look up survival statistics online. Jeez - those things are out of date and scary. According to them, most of us should be dead now, and we so very much aren't. I don't want to blow sunshine up your bottom, as we do have a serious illness, but some of those statisitics make it seem like we stage 4s are two heartbeats away from turning into zombies.

I'm in the portion of the cancer event that should be titled "How can I be sick, when I feel this good?"

Long way of saying that until you and your Onc have some real data to hand, you can't really have the meaty discussion that you are longing for. One thing you should push for is a mastectomy, when you have your treatment plan figured out. Studies are pointing to longer term survival for Stage 4 primary diagnosis if you get rid of the mother ship tumor. Some docs don't do a mast on the horse-is-already-out-of-the-barn theory, so ask yours where she stands on the issue.

Stay sane. Distract yourself.

Jennifer

Vevs

I am new here and have never posted before. Not sure if this thread is still active. Could anyone help me out? I'm not in the best place and could do with some positive support

blainejennifer

Vevs,

It is best to make a new post that is all yours. With the older posts, it saddens us to see some names that are no longer around. So, tell us all about yourself in a lovely new post, and you will be pleased at the responses.

Jennifer

Iwrite

Hi Vevs,

Welcome Vevs! There is a lot of great information you may find helpful in the Bone Mets Thread. So sorry you have to join us, but it's a great group of people and you will find lots of good information and support. The beginning is so difficult, but once you have a treatment plan in place you will feel much better.

Kathryn

Inaya

hello dear hope u are doing well my mom had the same diagnosis can i get more details about ur treatment and for how much time did u take it thank u xoxo

Laurie09

Edited because I didn't realize this was an old post.

Vevs, There is a lot of hope for effective treatment maintaining good quality of life.I have extensive bone mets like you. Keep going and keep up the exercise! I have been told that time and time again by my Drs. I keep worrying about fractures, etc, but they keep telling me to listen to my body and don't give up exercising. I have learned to tweak my activities depending on what is hurting at the time, LOL. I feel so much better when I am active. Hugs to you and you are not alone!