Hi
Diagnosed with stage 4 bone mets 2 months ago after a fracture was discovered on a routine Xray..had breast cancer 24 yrs ago and assumed I was ok!!.. not so
I’ve had some radiotherapy 2 weeks ago to the fracture mainly for pain relief..just wondered if any of you girls have had this and how soon did you feel any benefits
Barbara
Nice to meet you. I’m diagnosed since January 30. I was stage 2 for less than 2 years. I’ve heard many mention good success w pain relief from radiation. I
Have bone Mets and a spot on my scalp.
❤️
Hi, Barb! You sound a lot like me. I had BC 17 years ago and thought I was home free. MBC diagnosed in November with mets to spine. I had 10 rounds of radiation and my back pain decreased dramatically after a month or so. I am also on monthly injection of Xgeva for bone stabilization. I still get occasional back pain when I overexert, but it is very manageable with Extra Strength Tylenol. God bless you! Linda XO
Hi Linda
I manage on ibuprofen and paracetamol
Was prescribed morphine but omg they messed up my digestive system
I also have a few nodules in pleura and I do get breathless walking up hills but hopefully the Ibrance letrazole will help with that..I have the bone strengthening injections as well
I need to keep going for my daughters wedding next year..mad dancing for a start!!
LOL! You go, Barb! Are you on a med protocol as well? I've been taking Ibrance/Letrazole since December, along with a monthly injection of Xgeva to stabilize the bones in my spine. Linda
I’m on exactly same medication as you
and desperate to ride my horse again..I hate being inactive
Barn
If you were talking to my oncologist, she would tell you what she has told me: "You have a very "shy" cancer. That is why it didn't return for such an extensive period. Do NOT spend your life savings. You are more likely to die in a car accident years from now, and no one will ever know you had MBC." Despite the suggestion of the car accident, her words are what have given me the most hope and have allowed me to move forward with the life I lived before the diagnosis. I DO get tired more easily and still have back aches (and have thinner hair) but it sure beats the alternative. So start practicing that "mad dancing" when you've had about six months of Xgeva. And discuss with your oncologist when it is safe to ride your horse again! Have a great day, Barb! (It's 8 a.m. in Seattle--and rainy--ugh!) 
Oh gosh I hope you’re right about this..my plan is to live a long time but the little voice in my head tries to say otherwise!!
It’s 5pm in England and we’re having a heatwave..too hot to sit out and I normally love the sun
I’m getting my 3rd xgeva shot soon and hope will benefit..not had side effects with it so that’s good
B x
Well I have been living with metastatic BC fir 21 years now. I never believed I beat it because it’s always there BUT that is not negative! Remission is like being cancer free and just as good! Mine reoccurred in plural fluid with nodes attached to lung. I’ve been on letrizole, again after 10 years off, and now Ibrance fir going in four months now. Let’s hooe and pray these drugs keep us going in the best possible way for many years to come. Many ladies are having great success andxdo can we!! Now as far as the last comment about “shy” cancer. Not my experience as my cancer us and always has been the most aggressive type and yet here IAm 21 years later fitting on beach with my youngest son and right now feeling pretty darn good!!
Thank you, you have no idea how much I needed to hear that..
This is sooo good to hear, since they said in November that mine seems to be a bit aggressive...that made me very anxious....I didn't do well with Ibrance however and am starting Taxol.
Please get a lot of rest and watch all possible infection while doing Taxol treatment. that was one of the chemos I had infused 21 years ago. It does give you very deep bone pain for a couple of days after each treatment and at times some peripheral neuropathy. I do not tell you this to frighten you but to tell you that those symptoms DO go away after a day or two. I did take 400 mgs of Ubiqinol CQ10 twice daily during that time and I believe that was a big help in not having a residual negative result. Taxol is an amazing drug and does shrink and dissolve tumors and I wish you the VERY best. Keep in touch.
Thank you for reaching out to me. We just got to our new house last Friday eve down here in FL, driving from Maryland in a moving truck...long story. .... I had my first onc appt on Monday, along with my second Taxol infusion, which became complicated. I had a reaction 3 minutes into the infusion. The new medical team was 'johnny on the spot' and took excellent care of me. The doctor is very informative, which my husband and I really appreciate. Yesterday and today, my hair has started to fall out in handfulls, every time I touch it. 
Going to look at wigs very soon. So glad to hear Taxol worked so well for you! I'm looking forward to the same success. Thanks also for the infection warnings.... We don't have internet connected yet, so I have limited access to this chat group. As well, our son arrived Tuesday eve from the Peace Corps in Africa for a medical leave visit to see how I am. He's been worried. So it's quite hectic these days. And yet so happy with our son here, after being away since May 2017. Hope to get internet tomorrow. (was supposed to be installled last weekend... ) Thanks again, blms. Wishing you all the best! Good night.
Hey, if you still have any hair left, SHAVE IT OFF! you will feel less victimized.
The hardest thing for most of us is thinking about how difficult this is on our children. And this is especially true of those of us whose mothers suffered and died from this disease. Understanding what our children are going through is brutal emotionally. I am 6 months past my youngest coming home to the same news. Now it is 95% better as I am surviving pretty well from treatment and to my husband and children I seem almost the same before MBC in this new form, so life goes on almost normal them right now. This is actually good.
Hi
After only two weeks on Ibrance my wbc were low and I’m anaemic so have had to stop Ibrance 125 mg
Seeing consultant Wednesday to discuss
I’m disappointed as want to be on this treatment..maybe I’ll be put on a lower dose
Strangely I felt ok..went on holiday and did a fair bit of walking
Anyway I’m getting on my horse today..need equine therapy!!!.. it will be a plod though..no silly stuff
Barb x
Hi Barb! My dose was lowered to 100mg a month ago and I’ll be getting rechecked this coming week. I think most docs simply lower the dosage without any loss of effectiveness. Hope you are enjoying that horse therapy! 😀. XO Linda
Hi
Got on my horse today for a sedate ride out with my daughter..I almost felt like the old me!!
Barb x
HOORAY!! 💥💥
Hi
Saw my onc today and wbc still low so can’t go back on Ibrance till they improve then probably go onto 100mg
However she said letrazole having a good effect as tumour markers have reduced by 50% in 2 months
Have to look on the bright side!
Watching Wimbledon st the moment..love tennis
Barb x
No worries, Barb! I had same problem with my WBC and am now on second cycle of 100mg, lowered from 125mg. And my WBC's increased as a result. Also watching Wimbledon--so sad that Roger Federer lost his match!!
Hi
That’s cheered me up..Im hoping to go on the new dose soon
Off to Spain on Saturday with some chums..they’re really good fun..they’ll look after me and make me laugh!!
I’m a Rafael Nadal fan but I do like Federer as well
Barb x
Yay for Rafael!! Just won a hard-fought match!!
😁🏸🏸
I also had a long span (22 years) from original diagnosis in 1995 to MBC diagnosis in October 2017 so can relate to the shock after so many years of thinking it was behind you. After being extremely tired for months, I experienced shortness of breath and was hospitalized twice in September and October with a diagnosis of pneumonia the first time and then MBC the second (asthma was also mentioned). I had "grey masses" in lungs that miraculously disappeared--there one day and gone the next day when I was to have a CT-guided lung biopsy--doctors said there was nothing to biopsy! But a PET scan after that showed the hilar nodes in lungs, as well as bone mets in many areas (hips/pelvis, spine, tailbone, shoulder blade). Also had a marble-sized tumor in shoulder/neck area that was biopsied and showed MBC. I started on Ibrance and Letrozole in October and on a February 2018 CT scan the lung lesions and lymph nodes were "no longer visualized" and the lump on my neck is also gone. I hope the drugs work as well on your lungs! (Had my first follow-up PET scan this week, but won't get results until next Tuesday.)
Thank you for sharing. I also have mbc in bones. White spread. Spine looks like connect the dots. Looking forward to relief the radiation may bring.
I had 5 treatments of radiation to my ribs spine arm for pain from bone mets. I felt a little better after each treatment. Could not walk straight, or move arm. Could do both after 5 treatments. The pain continued to get better as time went on.
Oh that’s reassuring as my radiotherapy was mainly for fractured T5 ..I’m being impatient as always and want a quick response but as you have explained it will be a gradual improvement
X
Yes, I was told I would feel better after radiation. But as the letrozole and Ibrance started working the pain would mostly stop. He was right. I do get som back burning if I am bending a lot. If I sit for a little while it stops. I rarely take an aleve if I will have a long day of shopping. But that is it. So just give it some time.
Hi there, I’m posting from the Isle of Wight in the U.K. I had breast cancer back in 1992 which was successfully treated with a lumpectomy followed by radiotherapy & chemotherapy. As the years went by I assumed everything was done & dusted.
In 2010 I started with back pain which my GP at the time kept saying would sort itself out! I battled for a year until finally I got a referral to an orthopaedic consultant. An MRI scan revealed bone mets to my thoracic & lumbar regions, pelvis, hips & left femur.
I had radiotherapy to relieve the back pain. It was very successful but don’t expect instant results. At the time I had monthly bone strengthening bio phosphate infusions, anastrozole tablets & paracetamol.
Unfortunately I broke my left hip which for a while was stable. Over time after a few falls, the hip became displaced & gradually affected my posture & ability to walk. The pain became unbearable & my pain relief was steadily increased. My quality of life was deeply affected. I couldn’t get the orthopaedic surgeon on the Island to do anything about it. He told me I had outlived the years he would have predicted at my point of diagnosis & I should just accept being wheelchair bound.
However, I insisted on a referral to Southampton & found a surgeon who was willing to operate on my, by now, very badly displaced hip. Currently I have had my right hip replaced for stability & I am having the left side done very soon. It will be a complex operation but I have every confidence in my surgeon.
Your resilient spirit is admirable.! thanks for sharing and keep us informed.
Oh you poor thing..and I’m moaning about a vertebral fracture!!.at least I can get around
I’ve noticed this week I’m managing on less painkillers so I guess radiotherapy working a bit
I thought it was only me who had metastasis a long time after initial cancer ..mine was 24 years ago..apparently it’s very rare
Good for you for pursuing care beyond that first surgeon!! What a jerk! God bless you and may your left hip surgery provide further relief! You are an awesome example to all of us!! 👍👍 Linda in Seattle
I noticed a lump in 2000, it was stage 2. Then last year it came back. So after 17 years I thought it was gone. I didn’t know it was considered rare. Wow me rare.😁
Hi
Yes apparently only 1-2% come back decades later..unlucky
However there are lots of treatments now so I console myself by saying if I had this stage 4 all those years ago there were very few treatment options so I guess should be grateful for that !!
I’m still mad as hell though!!
B x
Really! My Mom passed away after 20 years but in 1990. All this time I thought I inherited it but Her2 is not. So I was unlucky with that and coming back. Brac 1and 2 only ones inherited. Very very hard to believe but she was young 30, I was 40’s. And Both came back after almost 20 years. Your new here?
Hi
Yes new here..found this site purely by accident
Trying to come to terms with this horrible disease
Just been away for a few days which perked me up..I’m afraid I’ve been hiding myself away and lost my confidence mainly because I feel breathless and weak so nervous about walking out by myself as I live on a hill ..hoping the Ibrance and letrazole will improve my fitness..doing some exercises st home and planning on riding again
X
I didn’t notice any great improvement with my radiation but I was in a whole lot of pain for a year before I got the correct diagnosis.
Same here
I also blame myself for not insisting on a scan of my back but it didn’t occur to me that it could be bone mets as I’d had a bad riding accident last summer and assumed pain was from that..how stupid I was..hindsight is a wonderful thing!!
Hope all well with you
X
Hi Barteeth,
welcome to the group.
I had severe pain in my lower back, figured I tore a muscle or something. I was shocked to find out I had a cancerous tumor pushing on my spine. I had surgery to remove it, some radiation. I discovered it is breast cancer stage iv. Since then I have been on two different chemo treatments. I actually am combining traditional treatment with alternative. I am taking exemestane and afinitor for traditional, Hoxsey diet/treatment for alternative. I started on the exemestane/afinitor two months ago, the Hoxsey alternative two weeks ago. My reason for wanting to do both is to hopefully improve my health but will see. I will know if it is working within a couple months, 3-4 months. The Hoxsey treatment is controversial, but my health is not the best so am giving it a try. I feel quite tired from the treatments, but that is normal.
Anyway, this a good support group. Take care, hope you feel better soon.
Hi Susie! Would you describe the Hoxsey treatment and why it’s controversial? Linda
Bone Mets below the knees
Bone Mets
Bone mets
Bone Mets
Good PET, bone mets symptoms
