Fractures

[Jan_Schnabel1]

I was diagnosed with bone METS in October, and have been battling a fractured pubic ramus that is taking forever to heal. Anyone else struggling with the same fracture?

[Ibelong]

Sorry to hear that you are dealing with slow healing of a fracture. I do not have any fractures. I am told by my oncologist that bone is very difficult to heal. He has been giving me Xgeva injections to help keep my bones strong and hope that in the long run it keeps them from breaking. I hope that you do heal soon.

[Jan_Schnabel1 in reply to Ibelong]

Thanks for the reply. I am getting Zometa infusions monthly for the same, in addition to taking mega doses of D3 and Calcium. I think I just need to be patient.

[Ibelong in reply to Jan_Schnabel1]

Having patience is difficult sometimes. Hang in there. Are you uncomfortable or in pain with limitations at this point?

[Jan_Schnabel1 in reply to Ibelong]

I am in some pain. The limitations aren't horrible. I can't run or even jog, and I can't lift much of anything. When I get up from a seated position, the first few steps are the worst. But otherwise, I'm still working and doing pretty much everything I used to.

[Kats3]

Hi Jan,

Am glad you're on a bone strengthener like Xgeva. I too have bone mets and am on Zometa infusions. I also take Calcium with Vitamin D. What do you consider mega doses?

I had several hairline fractures to my ribs, spine, and pelvis. According to x-rays taken in Sept 2016, the fractures are healing and my doctor feels that I'm out of danger of having any future fractures. I do have bone pain around my torso and especially left rib if I do too many physical things.

I believe that radiation of a particular area will be recommended if my pain gets worse.

Did you have an x-ray of that pubic ramus? Do you think your doctor will recommend radiation in order to help ease the pain? I know several women who have had radiation and feel much better. I'd discuss this with your Oncologist.

Wishing you good luck! Let me know how much Calcium you take. Thanks! Kats3

[Jan_Schnabel1 in reply to Kats3]

Hi Kats! Thanks for the reply. I am taking 2000 units of calcium and 1200 mg of D3. I'm not sure that actually qualifies as "mega" doses, but it's about all I can tolerate. You really need to eat, particularly with the calcium.

When I was diagnosed in October, they actually started my treatement plan with 10 fractions of radiation from the waist down, primarily because of the pain in the left hip, pelvic area, but it did nothing for the pain. Frustrated by the lack of relief, after another six weeks, I insisted that they look deeper into the source of the pain...it took an MRI to find the fractured pubic ramus. Apparently, it is a very common injury for female runners, but one that is difficult to diagnose because you have to look so deep to find it! While I used to run almost daily as well, I would just be happy to walk again without a limp!

As for my other fractures, I started out with a few fractured ribs, in addition to the pubic ramus, but they have healed nicely. I don't even feel the pain when I cough or sneeze anymore, which used to be excruciating. The PET scan I had in October revealed that the cancer lesions covered the majority of my spine, ribs, pelvis and long bone femurs. I also had a strange sensation/headache while traveling around the holiday so I asked them to do an MRI of my head, which thankfully, revealed that the cancer is not in my brain, but it did reveal a number of sclerotic or healing lesions on my skull. A little freaky, but again, just grateful that it wasn't brain.

Thanks again for the response. I wish you all the best in your continued battle as well. Jan.

[Kats3 in reply to Jan_Schnabel1]

Hi Jan,

Could you tell me what type of BC you have? Mine is lobular, the sneaky one. Also, what type of drugs or treatment plan are you on? Are you Her2+ or -? They say that Her2+ can have an increased rate of brain metastisis. I'm Her2-. I worry about mets going to my liver.

Right now I'm on Xeloda but my markers have been climbing. I may get switched to Ibrance and Femara in the next couple of months. My next CT scan is at end of March.

I too was worried about brain mets and asked for a brain MRI. Thankfully it came out clear. I made a mistake about you being on Xgeva when you're actually on Zometa like me. I've had 24 infusions so far and now will get them every 3 months. How many have you had? Besides the pain from the pubic ramus, do you have any pain in spine or torso? I do. Also pain in my pelvic area. I feel limited now and miss being more active like I used to be before this metastisis. I can just imagine how you feel not being able to do your daily running!

I guess our priority has now changed to "containing" or destroying the cancer cells in our bones. I never thought I'd be in this predicament, ever!

Oh, one more thing: What do you take for pain?

Bye for now! Kats3

[Jan_Schnabel1 in reply to Kats3]

I'm with you girlfriend...I too, can't believe I'm here. I was almost 10 years cancer free, and the first cancer was stage 1, grade 1, no lymphnode involvement, no chemo, just a little lumpectomy with completely clean margins. I had 33 fractions of radiation and two years of zolodex injections...just to be safe and boom, done, nothing. Then, out of the blue over the summer last year, while remodeling a house I had just bought, I kept having odd pains in my back...not my spine, just top right, bottom left...no idea what was going on and just thought it was from the work I was doing on the house. And nothing excruciating, just annoying. But by the end of August, I had had enough and asked my GP to do some x-rays.

We saw nothing, but the radiologist saw a tiny "something" on the left that turned out to be a cracked rib which led to the CT that showed lots of cracked ribs and the reason behind them. Following the upper CT was a lower CT, a PET scan and a bone biopsy. Official diagnosis was Stage 4 Metastatic Breast Cancer of the Bone, HER+ no organ involvement, but the little bastards got to almost every bone in my body!

So...not much more to say beyond my last note. After the 10 fractions of radiation did nothing for the pain, but certainly killed the cancer lesions, I have continued on the estrogeen inhibitors and the Zometa infusions.

I did however, seek a second opinion in December. I saw the head of BC Oncology at OHSU. She said the only addition she would add to my regimen was the Ibrance. So now, instead of the Anastrozole, I am on Letrozole, coupled with the Ibrance. But I've only been on it two weeks today, and I've only had three Zometa infusions, so I'm not much of a case study yet.

I have thankfully suffered no side effects from any of the drugs, and continue to work. I am a little tired, and my bones ache some days more than others, but I try to stay too busy to notice.

Like you, I am absolutely terrified, but I refuse to let this disease define me. I may not know that much about Bone Mets, but Bone Mets doesn't know me either. I have so got this...most days anyway.

Let's stay connected...know that I am praying for you, for me, for all of us, that we go beyond survivor to thriver!

Jan.

[Jan_Schnabel1 in reply to Jan_Schnabel1]

Sorry...you asked what I took for pain. I take Oxycodone three times a day. I'm not one for narcotics, but I have found that if you're taking them for pain, they really do go straight to the pain...I really don't feel woozy or silly...just pain relief. I'm also taking Gabapentin four times per day. Not sure if one or both are doing the trick, but other than the pain from the broken pubic ramus, for the most part, I'm just a little achy from time to time.

[Kats3 in reply to Jan_Schnabel1]

Hi again,

Your story has many similarities to mine though I didn't have a 10- yr cancer- free span like you did. I had a teeny tumor which was removed by a lumpectomy. Even though I had 1 positive lymph node, it was felt that I didn't need chemo. I had 33 rounds of radiation to the breast and axillary node area. Then I was put on Anastrozole for 1 1/2 yrs. No blood tests during that time period, no scans, no nothing. Then, out of the blue, like you, I started having bone pain....mine in my left rib, then the right rib. Went through the x-ray route, CT scans, MRI and finally the bone biopsy. Hello bone mets! Was devastated! Left Onco doc who didn't watch me carefully and now am with someone who!s watching me very carefully.

Oh...you didn't tell me what type of BC you have. If you're HR2+, you must have ductal. That's important to know.

I'm finding out more and more about my lobular BC. I have Pleomorphic Invasive Lobular BC. I just got through watching the Webinar on this site which was all about Lobular BC and at the end of it a question was asked about Pleomorphic Lobular BC and how it should be treated. The experts said CHEMOTHERAPY! Right now I'm beside myself! RegularLobular usually responds very well to Estrogen inhibitors and mine didn't. I've been responding better to the Xeloda which is a chemo oral pill. Now I know why. I'm going to have to talk to my Onc about this. They say we Lobular BC patients must be treated differently than ductal BC patients. Also lobular BC is easily missed on mammograms and even on CT scans and MRI's. More research needs to be done on Lobular BC.

I was on Oxycodone for 4 months while waiting for my diagnosis and it made me nauseous. I couldn't eat and lost over 20 lbs. When I started on the Zometa and started feeling less pain, I was prescribed Fentanyl patches and Ibuprophen and finally the pain was bearable. I'm only on Ibuprophen and Lidocaine patches now and have Voltaren cream to rub on when necessary. But I'm still in pain.

Sorry to go on so long, but right now I'm upset. I was not treated correctly. The Pleomorphic diagnosis means that my BC is more aggressive and the cells divide faster. My surgeon told me this. And what did they do? Minimal! I did go for a 2nd opinion at Dana Farber and they said I was getting the right treatment. Now I just don't know. I'll be anxious to talk this all over with my doctor.

Let's keep in touch. At least you had 10 carefree years, but still I feel badly that you're going through what you are. Let me know if you're ductal or not. I think you'll do well on your new treatment with the Ibrance.

Take care. Kats3

[Jan_Schnabel1]

Hi Kats. Sorry for the delayed response...I've been swamped. I am also HER2-. I am neither ductal or lobular. It seems very strange to have breast cancer that has nothing to do with my breasts, at least not this time. Ironically, my annual mammogram was the afternoon following my diagnosis...they were clean as a whistle. Both of my oncologists were shocked that it came back at all, based on the numbers from my first one ten years ago. They weren't the only ones who were surprised! How are you feeling today? I am so sorry you feel that your treatment hasn't been as aggressive or appropriate as it should have been. I know that I have to stay on top of my team as well and it is very frustrating.

[Kats3]

Hi Jan,

I am totally perplexed about your BC diagnosis and that the lab can't determine what type of BC it is. I bet it's Lobular because that's a hard one to see on a mammogram. It's sneaky.Now they're doing ultrasounds after mammograms with women with dense breasts or there are any questions abt the diagnosis.

. Do you have the copy of your Pathology report from 10 years ago? In that report they tell you exactly what type of BC you have, the dimensions, + sub type like ER+, Her2- etc. I have mine and look at it now and again. I gave a copy of it to my new Oncologist. That pathologist report is VERY important in that it determines your course of treatment. If you don' t have it, ask for it. Just reading it will tell you everything you need to know.

My last mammogram came out perfect, like you're saying about yours. But the original diagnosis paints a very different picture. This means that even though your mammogram looks fine, microscopic cells had gone into your bloodstream and travelled to your bones, just like me. It took 10 years for your metastisis to show up. For me, it was 2 years though I believe the cancerous cells had already begun their journey before I had my lumpectomy. No scans were done before my lumpectomy which would've shown bone involvement.

Did you have any lymph nodes that were cancerous when they did your lumpectomy? That will also be included in your pathology report. I had one positive node. I should've had chemo at that time, but the Oncologist didn't think it was necessary. Ha! Now I'm paying the price for his oversight.

Get ahold of that report and know exactly what type of BC you're dealing with. I'm sure your Oncologist already knows. Ask him.

I'm doing ok. We had almost 20 inches of snow here and I went out and shoveled. Now my bones are rebelling big time!

Keep in touch! Wishing you well..... Kats3

[Jan_Schnabel1]

Hi Kats! Wow...20" of snow...where do you live? I live in Vancouver, Wa...we are just getting a lot of rain these days. We had 16"of snow last month. Hopefully we are done with that!

So...here are my details. I am ER+ and PR+. I am HER2-. Looking at the original pathology report, which I can honestly say I have never looked at before, the "histologic type" is "invasive ductal carcinoma." I had a small lumpectomy at 8:00 on the left breast in April of 2007. The margins were clean and there was no lymph node involvement. Did I get it all? I have pulled it from my file in the event I missed something!

With that, I am certainly learning a lot. I am still working and traveling with my job...I always have, which explains why I have been so disconnected to the specifics, but I have learned very quickly that I have to own this mess. I love my oncologist, but I love me more, and believe me, I am keeping her hopping.

In addition to the medical protocol, I see a nutritionist, an acupuncturist, a naturopath and a counselor trained in all aspects of cancer care. I am also in PT for my hip and am reading everything I can get my hands on.

And here is a little bit about me, other than the cancer...I am 55, I have two grown children, two grandchildren, one who I am raising, and I work as a safety engineer specializing in hospitality risks. I have three dogs that I love, but are driving me crazy, and an on-again, off-again fiance that I think I've finally decided to keep.

As much as it's trying, I am determined to stay strong and not allow this disease to define me. But at the end of the day, I am terrified. It is the first thing I think of when I wake up, and it's the last thing I think of before closing my eyes, which I still find harder to do than I did prior to the diagnosis.

Ultimately, for me, the answer has been staying busy, eating right and fighting the urge to stay in bed all day. I pray the same for us all

Despite the statistics individually, we are all a statistic of one. No one is going to tell me how much time I have left. I am resolved to keeping that a secret for some years to come.

Write any time. I try to check the site a couple times each day.

Take care Kats! I'm here if you want to chat.

Jan

[Kats3]

Hi Jan, Well, I'm glad you got clarification as to the type of breast cancer you were diagnosed with. That's important to know. Like me, chemo was not recommended, and in hindsight, it probably should've been.

My sister had ductal BC in 2001 at age 57. Her tumor was larger than my tiny one, but she had a quadrantectomy,, 4 rounds of chemo even though she had NO lymph node involvement, then 33 rounds of radiation. Was put on 3 yrs of Tamoxifen + 2 yrs of Arimidex as she was ER+. She's now 73 and fit as a fiddle and full of energy! She's very healthy!

I envy your having a nutritionist, naturopath, and acupuncturist! I can't find any of these people in my neck of the woods. I would especially like to see a nutritionist and naturopath. Are they helping you?

I'm taking organic supplements from the Health Food Store near me. These people know a lot about cancer! I drink coffee with mushroom extracts in it and also mushroom tea. I stopped the Turmeric and Ginger capsules until my Oncologist researches it more to see that it doesn't interferes with my Xeloda. I also take Milk Thistle which is a detoxifier of the liver. My Oncologist approves.

I live abt 45 miles west of Boston, MA. I own my own home, a little ranch. Am divorced with no children.

I made a big mistake shoveling all that snow yesterday! Today my left rib KILLED me! I have a heating pad on it right now. We have more snow coming tomorrow and a much bigger storm coming Sunday night into Monday. I spoke to my sister and she said she'd come down and sleep over a couple of nights and help with the shoveling. I did ask the guy next door if he'd do my front sidewalk when he does his with the snow blower. I have a small driveway and use my little electric Toro shovel to do that.

But after experiencing all the pain today, I'm seriously considering selling my house and going somewhere where I don't have to worry about upkeep. Where this is, I don't know. I'm a young 67 and was very active physically before this BC crisis hit!

Do you get a lot of scans? How often do you see your Onc since the Mets appeared? I see my doctor once a month. I have bloodwork done two days before seeing him so that he can go over where things stand, such as tumor markers, W/Red blood counts, etc. At one point I became anemic and had to receive over 10 Procrit shots to bring my hemoglobin counts up to normal. At least he's on the ball with me!

I believe that I'll be heading to the Ibrance+ Letrozole next just like you. Are you tolerating this well?

I've been doing a lot of reading on the mind/ body connection. This guy, Neville Goddard, who's no longer here, lectured and wrote several books on the power of imagination. He gives advice as to how your imagination can help you get the things you'd like in life, i.e.: good health.

He says before going to sleep, close your eyes and "imagine" yourself being exactly as you would like to be. Envision that you are ALREADY that. 'See" yourself as healthy. Feel what it feels like in imagination. Do this every night, and if you can, several times during the day. He says, "Deny the senses and assume the feeling of the wish fulfilled." If you do this correctly and with persistence, what you hold in your imagination will harden into fact. A good book of his is " The Power of Awareness." Dr. Wayne Dyer talked about this Neville guy a lot and that's when I went to Amazon and looked up his books. He was extremely popular in his day. I must say, when I read his books, I feel encouraged and "up." He can be a little deep at times and you may want to re-read his passages over more than once, but he does get down to the nitty- gritty as far as visualizing what you want and how his law of assumption works. He has case histories in the back of this book where people followed his method and how they got what it is that they wanted! I find it very inspiring. One case history tells of a young man who was very ill and he and his wife followed Neville's method and he was cured! You might want to check out the book..

That's it from here! Wishing you a good weekend!

You're doing well if you're still working! I don't think I could at this time. Think positive as much as you can. Tonight before closing your eyes to sleep think " I am healthy." That thought will work on your subconscious and do you a lot of good. Ciao for now. Kats3