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Bone mets only

Hi ladies

I have extensive bone mets..spine pelvis ribs sternum

My oncologist said if the treatment works then the number of mets doesn’t matter. Has anyone else been told this?

I’m on letrazole and 100mg Ibrance and monthly denosemab

Barb x

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Yes, I'm in the same position and I've been told the same thing 🙂

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Hi julie

Well that’s eased my mind a bit..when I’m in a negative mood I tend to be a bit suspicious of things I’m told by the professionals..just in case they’re trying to make me feel better

Barb xx

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I know what you mean. I've found out far more from reading posts on this site than I have from any oncologist.

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Hiya

Yes it’s good to share information and opinions as not all oncologists tell us the same things

Barb x

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Hi Barb,

I was diagnosed in March and have extensive bone mets as well. I am also on the same treatment plan and in addition receive an injection of Lupron (monthly) to shut down my ovaries. I’ve been told the same thing by two oncologists (UVM Medical Center and Dana Farber).

I was in terrible pain prior to my diagnosis. After 5 months of treatment I feel a lot better and my tumor markers have gone from 400 to 50. I am due for a CT/bone scan next month.

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Hello

We are in the exact situation..I have a CT scan tomorrow and results next week..so nervous

I have a fractured vertebrae at T5 and in pain with that as well as pain in other bones..my markers were over 1000 but now fallen to 280 which is reassuring..still very high though

Barb xc

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Hi Barb,

Does your doctor have a plan for your fractured vertebrae? How are you coping with the pain?

So happy to hear that your markers are trending down!

Good luck tomorrow, sending ❤️!

xo Jade

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Hi jade

I had a radiotherapy session on th

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Hi jade

Had radiotherapy on the fracture..just 1session and it made a slight difference

I take co-codamol/ibuprofen and occasionally morphine although I prefer not to take the strong stuff

I like to ride my horse when I can so need the painkillers for that!!..wear an air vest in case I come off!!

I just hope the fracture will heal a bit when/if treatment works as it’s spoiling my life..if it wasn’t for the fracture pain I think I would cope better

Barb xx

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I was also told that I had a fractured vertebrae when I was diagnosed in March. Following my ct scan a couple of weeks ago I was told that bone healing was seen, I asked my oncologist about the fracture and he said that it was healing but would take time.

I was in awful pain prior to diagnosis (and I have a very high pain threshold) my previous oncologist told me to take the maximum dose of paracetamol but nothing else. The orthopaedic consultant who actually found the fracture and mets had advised a prescription painkiller but she refused to prescribe it. Though following a single blast of radiotherapy and starting on the ibrance etc i'm now pain free.

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Hi Julie

That’s given me a bit of hope..just finishing the first round of 100 mg Ibrance so maybe like you I’ll get more pain relief..it does drag me down..like you I’m not one to complain about pain!!

All the best

Barb x

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Hi Barb,

I have spine and pelvic mets too. I also was in severe pain as I had a partial compression fracture of one vertebra. I guess It really helped that I was strong from Pilates training but still the drugs have helped too after just 2 months. I know you said you love riding your horse and TOTALLY get our need to do what we love but as a physical trainer my 2 cents is to avoid your horse just while you heal. Even if you go slowly I imagine there has to be a fair amount of up and down pressure along the spine? When I couldn't do my Pilates I started more walking regularly, just at a moderate pace, focusing on standing tall, and that seemed to speed my recovery a lot.

It's no fun being in pain so I hope it gets better for you quickly.

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Hi

I know what you’re saying and I did stop riding for 3 months after my fracture and mets diagnosis as the pain was hideous.. my oncologist said I can ride now

Like you I was very fit..twice weekly yoga ..competing with my horse and working part time..how life has changed..hate it

Thanks for your advice

All the best

Barb xx

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Hi

Me again

I’m going to have some acupuncture next week to see if that’ll help..had it before for other conditions and it worked

I saw on this site that other ladies have had good results..nothing to lose!!

Barb x

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I go to acupuncture every 3 weeks. I love it. I highly recommend it!

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How was acupuncture?

xx Jade

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Hello

I’ve had 2 sessions and it helped a little bit but tbh not as much as I hoped for

I’ve decided to go ahead with the kyphoplasty procedure and have the cementing of the collapsed vertebrae..fed up of pain..I can ride or walk for about 20 mins then the pain kicks off so it spoils things..I went to the zoo today mainly to see the bears rescued from Japan..had to keep stopping to sit for a bit

Barb xx

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Hi julie

Has anyone suggested having kyphoplasty..bone cement..done for your fracture..I’m wary because of slight risk of paralysis but fed up of pain..don’t know what to do and don’t know anyone whose had the procedure

Barb xx

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No, I didn't even know it was possible before I read about it on this site. I asked my oncologist about the fracture the other week and he said it would slowly heal.

I re-fractured a vertebrae that I'd fractured as a child but didn't know about until it was found in my 30s when my discs started to age. I supose the cancer went to the weakest spot. That was part of the problem because when the pain came back in the same location last year I thought it was just my long standing back problem.

Another thing I do to help with the pain is lying on the floor with my bottom against the sofa and my calves on the seat of the sofa. It takes the pressure off my back. Lying like that for 10 minutes is great though completely confuses the dogs!

Julie x

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I had a fracture on my L1 vertebrae. They did a cementing procedure this summer.

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Hiya

I saw a spine specialist after my fracture diagnosis and almost had the kyphoplasty done but chickened out as I heard that there was a small chance of paralysis..the way I felt at that time made me hesitate..I just didn’t feel lucky!!

Did it stop your pain?.. I suppose I could still have it done but very wary

I know they have to tell you the worst case scenario but it did put me off

Barb xx

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Hi

Was it a kyphoplasty..did it work?

Barb xx

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It worked great! No more pain there, but I'm having muscle pain in my lower back. I just got a muscle relaxant the other day. I'm hoping this will help.

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Was told that it didn't matter, treatment the same. WRONG. I got a second opinion and so glad I did. I urge you to do so too. The ladies on here gave me the courage to do so as I was always intimidated and afraid about making my onc mad. Just hope now that its in my liver also I didn't wait too long. I also was on Ibrance, fosladex, zometa, and letrozole at the time. Now on Xeloda and zometa. Good luck

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Hello!

I'm guessing he's correct, because the treatment will effect any and all existing tumors and progression, not just a few of them. Each tumor should react the same way. I am on same exact protocol as you (including 100mg ibrance) and so far, so good. Linda

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I was diagnosed with denovo MBC with extensive bone mets in March, 2004! Bone mets in several vertebrae, pelvis, rib and shoulder blade. I had my 58th birthday that month and was definitely postmenopausal. I've had to have two back surgeries at L 4-5, not at all related to the bone mets, but in an area of bone mets. The mets did not interfere with the surgery and the surgery did not interfere with the mets. How crazy does that sound! I had a lumpectomy but have not had radiation or chemo. Hormonal treatment has done a wonderful job of keeping the bone mets under control. I tried Ibrance along with the Faslodex I had been on for awhile and did not tolerate it well at all. I've also been on Zometa, and then Xgeva, for my bones, though I had to take a break from those for awhile due to my bones becoming "brittle on the outside and soft on the inside." Some of us who are postmenopausal when diagnosed with bone mets only and E+ mbc do exceptionally well. The bone drugs have been real game changers for bone mets as people used to get multiple fractures and less mobile and would develop pneumonia from lying around and would die from that. We have alot to be hopeful about. Though living with this cancer isn't fun, and many of us deal with fatigue. I'm used to getting alot done.....not so much recently and that is quite an adjustment. And of course I would rather blame cancer than age! lol

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You are an inspiration to us all, especially me. I am de nova with only bone mets. 16 months and feeling good.

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Your story gives me hope. Thank you so much for sharing it. I needed to hear it today. Blessings 💖

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What type of treatments are you taking for just your bone mets? You did state your not taking no chemo. How long have you had bone mets?

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My onc suspects that I'd had bone mets for several years when they were diagnosed 14 1/2 years ago! I was on Femara and Zometa at first. Got almost five years from the Femara. Switched to Faslodex after a bit of progression. When Xgeva was approved by the FDA, I switched to that from the Zometa. (I am allergic to Zometa and had to be premedicated with hydrocortisone and benedryl, had extra fluids and longer infusion time plus just a half dose of the Zometa). I got over 9 years from Faslodex. We added Ibrance to the Faslodex in early 2016, again after some progression, but I did not tolerate the Ibrance well and developed a lung condition called Interstitial Lung Disease. Earlier this year, I stopped Faslodex and started Aromasin. My onc retired this summer, rather suddenly, and I will see another onc Oct 1. One thing I suggest to anybody with mbc is gettig a second opinion from a bc specialist onc. The top cancer centers in the US are those designated "Comprehensive Cancer Centers" and listed on the website of the National Cancer Institute. It may take a little exploring of that site to find their list of cancer centers. But the CCCs have bc specialist oncs who see patients and do research, and are on top of the latest research and protocols. My insurance covered my appt with a specialist onc with just a co pay for the office visit and it was very worth while just for hte reassurance it gave my family! She looked me in the eye and told me that I was not dying and had years not months.....I could feel my husband and grown daughter relax when they heard that. i know I am fortunate to have easily controlled cancer cells. I've never had symptoms from the cancer though I am tired. But never any pain.

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Hi

I’m taking Ibrance 100mg letrazole and xgeva shots

I’ve only been diagnosed this year but have had back pain for a long time so I suspect the mets have been there for years..only discovered after a fracture was investigated with an X-ray

Barb xx

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Just wanted to let you know that I, too, had several bone mets on Jan. 2017 scan and after Ibrance, 75 mg., faslodex and xgeva, my next scan in June showed full treatment response. Meaning, no mets seen. So, FWIW, it's working for me. I do get tired and have some nagging aches and pains, but a fair trade off for no more mets. I hope it all goes well for you, too! :-)

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Hi

I’m going for my second ct scan this morning..I hope I’ll be like you with positive results

Happy for you

Barb xx

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My onc and my second opinion bc specialist onc both "warned" me early on that it can take awhile for hormonal treatment to show progress, so don't get too discouraged if your first scans don't show improvement. Also, bone mets can be hard to track because active bone mets and healing bone mets can look alot alike on scans. Such craziness we have to live with!

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Hi

Yes I read that somewhere about mets and healing bones are hard to distinguish from one another..not very encouraging as I want to know for definite what’s going on..I guess tumour markers also are another indicator of progression or not

Hate all this!!!

Barb xx

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Congrats on your scans! God bless you, continue to fight for a cure!!

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Are you currently taking chemo are just monthly injections

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I'm not sure what's officially considered "chemo" and what's not, but I'm on faslodex monthly and Ibrance. Both have been referred to as chemo. Not sure. It's definitely not sitting in a chair with an IV drip chemo, thank God! I did notice that my faslodex was in a bag marked chemotherapy. Ibrance has been called chemo and targeted....so maybe it's just a semantic issue.

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Hi Barb, yes, I was basically told the same as you.

Blessings

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Hi Barb

As a dentist perhaps you could help me with a query. I have been told they are going to put me on bone protection at my next appointment and likely to start Denosemab however from others with bone mets understand it could cause jaw problems.

I have 5 implants and 2 crowns. I see both the hygienist and dentist regularly and just realised I have I have an appointment tomorrow!

Denosemab has has so much bad press from users who have had horrible and painful experiences, I am feeling quite nervous about it I want to give the dentist as much info on the product as possible.

The oncologist also was also mentioned Zoledronic acid.

I have just seen your post about scan results, delighted for you... hope you had a good lunch with 2 glasses!

Gigi

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Hi Gigi

I only had 1 glass but a large!!!

If you are having regular hygienist appointments and your oral hygiene is excellent then you really ought not to be concerned unless you have loose teeth or gingivitis/periodontal disease

Denosemab can very rarely cause ostenecrosis of the jaw but usually due to surgery especially extractions

Your dentist will know about this and will probably take some X-rays to check your teeth for cavities and more importantly check bone levels especially as you have dental implants

When I was still practicing..I had quite a few ladies taking various bone strengthening drugs..none of them had any adverse reactions to dental procedures

Hope this helps

Barb xx

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Barb, thank you for replying so promptly. I sincerely hope my teeth and gums are ok but since finding I had stage 4 MBC when I felt so well. I take nothing for granted.

8 months previously following a fall where I landed awkwardly on my left shoulder, I could not rid myself of discomfort and difficulty raising my arm. My GP referred me first for steroid injections with no joy and then to a rheumatologist who called for MRI scans to rule out cancer given my previous history. He was delighted to tell me there was no evidence of a return of my cancer but did show what he thought my problem was and was dealing with it.

Within 4 months it was confirmed by a core biopsy a substantial cancer mass under my arm, skeleton mets throughout and similarly in my peritoneum and my oesophagus. The MRI scans have since been re-checked by a breast radiologist who confirmed there was no evidence of disease then.

So far I am very lucky in my tolerance of Ibrance and letrozole other than my already fine hair is thinning and I have an itchy scalp.

I have a very active social life and living life to the full. Which includes large glasses of wine!

I always knew I had been lucky so far because my wonderful (retired ) previous Onc told me 28 years ago that lobular breast cancer can always return.

Which region of the U.K. do you live in?

Thanks again and I will let you know how I get on.

Gigi

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Hi Gigi

Was rereading some posts on here and realised I didn’t answer your question about where I live..how rude of me!!

I live in Nottingham

Barb xx

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Hi Barb, no prob, it was probably rude my being so personal.

For some reason I thought you were in Scotland. I know a little of Notts,as I used to visit a dear friend in West Bridgeford until she passed away last year through complications from diabetes. I live in Bucks.

With regard to your help with the bone issue and possible teeth problems. My oncologist feels he would like to keep the bone strengthening drug in the armoury for later use! I will be very unhappy if I suffer any fractures...

A friend has just written to me about a Dr John Maher, a ground breaking immunologist apparently, who was featured recently in the ‘World wide cancer research magazine’ and is London based. Have you heard of him or indeed the magazine?

I am currently in warmer climes, which does wonders for the spirit and raising a glass to you and all fellow MBC sufferers.

Best wisheves

Gigixx

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Hi

No I haven’t heard of him..will google

Enjoy your sunny holiday

Barb xx

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Hi Crazy dentist,

Delighted to say my dentist does not think I should have a problem, although he has had patients on similiar drugs who have experienced problems with implants becoming loose. I have 2! I will increase my hygienist visits to every 3 months.

Thank you again Barb.

Gigi

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Hi

Sounds a good plan having more regular hygienist appointments

I’m sure you’re doing all the right things..the little interdental brushes and a good mouthwash..Curasept is brilliant

Barb xx

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