I am stage IV metastatic Breast Cancer. Double mastectomy. Currently on aromatase inhibitors and pain meds. The cancer has spread to my bones, primarily my spine where it has fractured my vertabrea. I am mostly bedfast because of the pain and so I don't break more bones. Looking for support.
Need support: I am stage IV metastatic... - SHARE Metastatic ...
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4muradian
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So sorry you have joined the ranks of those of us living with metastatic breast cancer. I was diagnosed with stage IV three years after my lumpectomy, radiation and chemotherapy. I thought I had it beat, but....no.
I do want to give you some hope. I was diagnosed with stage IV breast cancer to my bones in 1998. Yes, 18 years ago. It is possible to live with the disease.
I hope that your oncologist is looking into ways to end your bone pain from the fractures. There are things that can be done like inserting artificial bone material or rods. Then you might also be eligible for radiation which is great at controlling pain.
I'm hoping that you are or will be on Xgeva injections or another type of bone medication. That can also help. Your bones can heal but they will never be like they were before as what builds back is somewhat more fragile than the original bone.
I hope that you will feel well enough to do some sort of bone building exercise, like swimming or walking. Taking care of your bone health is critical.
Gentle hugs to you.
I was once on Xcheva. And have had several rounds of radiation for the pain. I appreciate you replying and encouraging.
Wow! 18 years. You have given me hope. I'm scheduled for my Petscan on Jan 6th since starting treatment for bone mets. Scared but hopeful at the same time....
When you have mets in the bone, your scans won't show dramatic improvement like they would if you responded and had, say, mets in the liver where tumors show shrinkage and can disappear in a matter of months. Bone scarring from dead tumors can look like active tumors and this condition may never resolve itself over time. The thing is that you don't want your bone mets tumors to spread or appear larger. So keep that in mind when you get your scan results. Stable or unchanged tumors on a bone mets scan result is VERY good news.
Awsome advise! It's hard to see your first scan after treatment. You just want to hear the bone mets are gone.
My first scan results were very mixed. Some looked stable or otherwise chronic, some looked as if they were growing but low signal so ummmm hummm and there were more new ones seen. Looking forward to my six months out since begining Ibrance therapy. Hoping for more stable results and no more new ones.
Thank you for sharing that. Stage IV MBC with bone mets in hip. Have new scan schedule for next week
I was diagnosed stage 4 breast cancer in December 2010 with mets to sacrum and illiac. I have been through many treatments but I am still here! Radiation is great for bone pain if you are a candidate for it. My illiac was so weak and think it was almost broken in two pieces. Radiation worked wonders. Don't get discouraged. There are new treatments developed all the time. Good luck.
18 yrs you are awsome! I was originally diagnosed stage IV mets. I never had the let down of having a secondary diagnosis. Come May 2017 it will be 10 yrs for me. I can't wait to hit 18.
Congratulations on living with MBC for nearly 10 years! It seems like drug discovery is accelerating due to all of the new knowledge of the different sub-types of breast cancer and how the various BC cancer types establish themselves, grow and travel in the body. I've served as an advocate reviewer on several breast cancer research proposal review panels and am seeing a lot of promising approaches that could eventually turn into treatments for many. The thing we both need to do is to try to stay as healthy as possible so that we're around when a potential cure or life-extending treatment comes along for us. Hugs to you and wishing you decades of happiness.
I am also Stage IV mets to the bone. Currently taking Letrozole daily in addition to zometa infuisions every three months. Diagonosis 9 months ago.No history of Cancer on either side of my family. I did have calcification removed form both my breast the righ in 2008 and in the left in 2009 both were ruled as no cancer.But the strange thing is the tumor in my right breast is in the exact spot where the calcifications were removed 8 years prior.I had all my scans in sept oncologist said that the tumor showd that it had reduced in size and that the Bone mets showen no progression.i do thank God for a postive report.It was nice to have 4 months off from scans and Injections.Trusting God that My Jan scan will be great!Waiting to hear NEC.
I am sending hugs and prayer to all...
Hi! I myself has been diagnosed with Stage IV and its now in my bones. I just read your comments and it's good to hear the positive input from you. Thanks for sharing I really need it for today.
Wow!! You made my day, 1998!!! I have bone mets too. Reading your post was very uplifting! What treatment did you get in 1998 to help strengthen your bones?
I'm getting Zometa infusions and of course I take Calcium with Vitamin D supplements. I try to go for walks when the weather permits, but now you've inspired me to really make it a point to do more for my bones. I was afraid that my bones were too weak to do much physically, but my Oncologist said that my x-rays show that the Zometa recalcified many of my fractures and that I wasn't in danger of future fractures at this point. So, yes, I'm going to try to do more bone strengthening exercises!
You are an inspiration 1998! Keep giving us bone met women any and all tips as we journey along the path that you've travelled for 18 years. God Bless and Happy New Year!!! Kats3
1998 thank you,you've myself and many hope I was diagnosed in 2008 2a estrogen based had left breast removed,came back in 2013 in bones put on letrezole,now to find it came back in bones again now on aromasin. I've been a good fighter but this one has me worried. Until I read your pist I hope myself and others has as good of a run
Our problem is that we will ALWAYS be on some sort treatment, unless we say "no more" or until a cure is found. Stay as healthy as you can, no matter what treatment you're on, so you will be able to withstand whatever may come your way. Some of my treatments only lasted a few months, and one worked for over 5 years. You never know which one might be your lucky charm. Hugs and love to you.
Thank you so much for sharing!!! 18 years is quite amazing and gives us beginners on this journey much hope...I have been on xgeva monthly and now after 2 years will go to every 3 months on xgeva and every month on Faslodex...what meds are you taking????
Sabal - I just finished 6 rounds of Ixempra with Herceptin and Perjeta. Right now, I'm only on H & P, dropping Ixempra due to extreme neuropathy and other side effects. Not sure what's next or whether I'll just stay the course on the 2 chemos just to stay stable. I was on Aredia (an earlier version of Xgeva) for about 6 years up until 2006. Now I just take Vitamin D and Calcium. Haven't had any fractures.
Hello 4muradian,
Glad you found us. I was a bit lost re MBC before I came despite a good support network at home. Medical team,friends and family don't seem to quite understand what is going on with this condition in terms of its ability to debilitate, dismay and isolate us.
Without prying into your medical status, I was wondering why you have not had any type of chemotherapy or radiation. treatment. Does your Oncologist think your S4 can be controlled by the Aromatise inhibitor alone?
Radiation to the area of your spine might help relieve the pain.
Xgeva (injection) or Xometa (infusion) are biphosphonates used initially for osteoporosis. They are being used now and have a role in bone mets.
Pain Patches, such as Versatis® (lidocaine 5℅ used for 12 hours on pain site) might help.
I wonder why your medical team have left you in bed. The rest of your body needs to be working at some level. Is a physiotherapist involved in your treatment?
Swimming might help tone the muscles and strengthen your back to support the bone more. My physio has advised gentle, no twist movement or bends; walking backwards and forwards. The use of a float held to the chest would add to resistance. Float face down/up. Laps if possible. Listen to your body.
Walking, no jogging. Keep to a short route near or around your house location Try to go outside and get air. Gradually your confidence will build and you might be able to do more and feel like life isn't a constant negative cycle.
I speak from my own experience. The general consensus on this support site seems to be taking back some control over one's life.
Medically we have to go with the Oncologist's decisions. However, they're might not always right for you. If you are anxious about asking questions, don't be. Bring someone with you to your appointments. Write down ALL your questions and leave space for the answers. Ask for further explanation if you don't understand the answer. Become a Diva if you have to. There are thousands of us seeking answers and help. You need a voice.
I've been dx since last January with S4, spine mets. After extensive radiotherapy this Spring, I wasted four months of my life taking oral Xeloda and cyclophosphamide. In September, the Ct scan showed it had spread to my liver and more to my spine. Two more weeks were lost to Gemzar (body rash rejection). Options diminish. I am now on Taxol and monthly Xometa. I question everything as on the occasions where I wasn't focused, they "dropped the ball". Your life. Take control.
All the best
Patricia1517
4muradian• in reply to
Patricia, thank you for your great wisdom. Yes I have had several rounds of chemotherapy and many more rounds of radiation for the pain. I take morphine, dilaudid, and the phentanyl patch...all for pain. Top it all off with some marijuana. I thank you for your support and you insight.
• in reply to4muradian
I'd certainly opt for one of the pain meds. What with all the talk an' all!😵 I think your the one with the wisdom!
From your list it sounds like you're under heavy meds. You'd have no trouble floating around the pool!
Best wishes,
Patricia
SusanDB• in reply to
Thank you, Patricia, for such a thorough response and explanation. I was first diagnosed in Jan 2016, stage IIB left Invasive Lobular & Ductal Carcinoma. Had barely finished 4 rounds of chemo (Taxotere/Cytoxin) and in July found out it had spread to my bones (skull base, 6 of 12 Thoracic vertebrae, 1 rib in front, sternum). After 10 weeks of radiation, I went on Xometa infusions, then added Letrozole and Ibrance. But in Dec I had so much pain in my lower back and hips--bone pain and muscle spasms--doc ordered an MRI of lumbar region and learned most of the vertebrae were fully involved and it had spread to my liver. Tomorrow I learn the results of scans last Fri, and will discuss the next step--probably start on Xeloda, oral chemo--2 weeks on, 1 off. I hope to see the results of the scans and will try to look for the signs of how the bones are repairing themselves. That will be exciting to see!
Just today I participated in the webinar on Invasive Lobular Breast Cancer--slides should be available-- sharecancersupport.org --844-ASK-SHARE. I learned a ton of helpful things, one being that Lobular BC responds better to hormonal therapies and less to chemo, though mine ranks as very aggressive and those don't respond as well. Another, that while IDC tends to metastasize to bones, liver, lungs, and brain, ILC metastasizes more to bone (lots of areas), liver, ovaries, GI, "unique" places, and the peritoneum (the membrane that surrounds abdominal organs).
Oh, another hiccup along the way. I finished 20 radiation treatments to my lower spine and of course have radiation burns. I forgot about keeping the area moisturized and no one at the clinic reminded me until I was done with #20. So I started using one cream and then they prescribed a silver type cream. Turns out I am allergic to it. So we made a trip to ER last night, rash spreading rapidly and some effects on my breathing. Got rehydrated, with a cocktail of steroids and other good things; the rash is fading rapidly and I am once again on oral steroids. Oh, the adventures of MBC. We live and learn and share and encourage. And I thank you all.
PJBinMI• in reply to
Dear Patricia,
Those of us with a hormone receptor positive mbc often don't have chemotherapy. Chemo is very often much less effective for E+ bc than the estrogen suppressing meds. Sometimes people mistakenly think that those are somehow "less aggressive" than chemo because the side effects tend to be so much more benign, but that isn't the case. I, for example, have had mbc for 13 years and have never had chemo or rads and have no plans for them, though that of course may change in the future. Rads can be effective for painful bone mets but sometimes a fairly mild pain med can work. I certainly agree that being bed ridden is not good. PT can be helpful as well as better pain management. Medicare generally pays for PT as long as progress is being documented.
Peace, Pam
• in reply toPJBinMI
Hello Pam,
Thank you for your reply.
I was on AI Aromasin for several years when cancer returned to a node in my right axilla. Tumour removed and put on Femara. Oncologist suggested radiotherapy but surgical team said no need. Following year a wider recurrence to same area. Med team finally realised that ER+ is AI hormone resistant. Hence oral chemo. Now on 18 sessions of Taxol. Working so far and 4 more doses to go.
That's the way it's done here in Ireland.
I've come to realise over the 14 years that there are only so many treatments available for what I have. The team chose not to go in heavy initially due to the general prognosis of MBC.
As indicated on this site, many of us are exceeding expectations which is good given the chronic nature of this disease.
Patricia1517
PJBinMI• in reply to
hI,
Where are you in Ireland? My husband's mother was an Irish Catholic whose grandmother came to the US from Ballybunion (sp?). He grew up in an Irish neighborhood of Chicago. My maternal grandmother was an Irish Catholic -- I don't know where her family lived in Ireland. My paternal grandfather was an Irish Protestant. Not sure where they were, either, but maybe Ballybeigh (sp?). It was quite upsetting to their families when they married! We both appreciate our Irish heritage! Peace!
• in reply toPJBinMI
Hello Pam,
70 million Irish descendants scattered throughout the world!
I live in Kenmare, South Kerry. Two hours drive from Ballybunion in North Kerry. A fabulous strand (beach) dominates the coastline there. Very busy in summer, weather dependent 🌈☔. Ballheigue is north Kerry also. Kerry is called the Kingdom due to its size, majestic landscape and history.
My parents were from Kerry and Galway. I was born in UK. My Kenmare born husband 'rescued' me and brought me 'home' 16 years ago. Shame that illness has played such a long role in that time. Only a role mind you😊
Patricia1517
I too have stage four, and I'm overwhelmed by the hopeful stories, I'm still somewhat numbed by the diagnosis, I have very little support, and I already get that people just don't get it,especially when they say..Oh you look so good....I'm like can you use your exray eyes, because I feel terrible... anyway thank you...still trying to embrace it all..any support will do,though I shut down a lot and don't always respond but I'm trying. ShiBost@aol.com
People tell me I look good all the time. I don't know what they think I'm supposed to look like. I had spine Mets to and some of it went away and move to other parts of my bones
No need to embrace it. You can be mad as hell at it. Just don't let it run you down. I like to reply to people who say you look good, with, thank you I have tried real hard to look this way I appreciate that you notice. I was diagnosed originally as stage IV. I was and still am mad as hell. I will never give in to it. I was 36 at diagnosis looking forward to the ten year mark May 2017.
When I was going through aggressive chemo I had no hair ,no eyebrows or eye lashes. My skin was grey and my nails were black I definitely didn't look like the picture of health,but I made sure I put make-up on, and eyelashes on my lids. and bought a wig that looked just like my hair and drew on eyebrows with a liner eyebrow pencil. I polished my nails to present the picture of health. In my travels to chemo. I saw a women who was beatiful ans slightly over weight, She looked at me and said I wish I were you. She had no idea I had breast cancer, and my oncologist said I was going to die in a year even though I was going to have aggressive treatment.Yes I thank God for beauty supply stores.I didn't want my loved ones to see me looking like I was at deaths door.Still here 9 years later no cancer in this body.I think some people just don't know what to say. Some people must expect us to look like some old ugly broke down trolls under a bridge(smile) just joking we are all beautiful in God's eyes! ! ! Amen
• in reply toRLN-overcomer
It's great when the Oncologist gets is So wrong. BTW, are you still with the same medical team?
Bravo for getting rid of the cancer.
RLN-overcomer• in reply to
Absolutely not . I got rid of that particular doctor quick/fast.I Thank God for the ability to discern/ choose the great doctors I have now. Amen! God bless you and all of my sisters/warriors in the struggle. Happy Valentines Day to you and your loved ones.
I also have bone Mets. It was mainly in my sternum but also in my spine. My spine seems to be getting better but it's moved to my pelvis and sacrum. In May my doctor told me I have 14 months left to live. I wasn't really happy with my oncologist so I went to a different hospital and doctor and got a second opinion and they seem more confident that I have longer than that. I hope it gets a little better for you. I have a monthly zometa infusions.
Why do some doctors think they're God and can tell a person when their time is up? That's terrible!! I was told that women with strictly bone mets have a long life span. No one can foresee the future! Look at 1998's post. She's still here after 18 years of a bone mets diagnosis, There's hope for all of us! Plus as time goes by newer and newer drugs are coming out that may benefit us and lead to an even longer survival time and maybe even a cure!
When I got my 2nd opinion at a major cancer center I was told that my prognosis was "unknown." The doctor was very encouraging. She said "Eat nutritionally and stay active." I was very much encouraged by her words and think of them often as I go for walks and carry on with my life. Yes, I've slowed down, but I'm not out of the race! Let's be as positive as we can, and help ourselves as best as we can, be it taking extra vitamins, using pain patches, creams, heat, pain meds, and eating Whole Foods, preferably free from chemicals or artificial ingredients, to keep our energy levels up.
If we need our doctor's help with staying mobile, we need to be proactive in our requests. Help is out there. A good doctor will do all that he/ she can to help us on this journey. We need only to ask and also be assertive.
Good luck everyone! Happy Healthy New Year! Kats3
Greetings: Kats3 you are so right, doctors can not tell their patients when life
in our bodies, on this earth will end . I serve a God of hope, healing,
restoration,and more importantly a God who is still in the business of
performing miracles. My one year to live prognosis 9 years ago by a doctor
with 38 years in oncology was off quite a bit. ( Doctor/God) has kept me ,here
on earth as we know it by at least 9 times what the medical oncologist
predicted, and with no detectable cancer in my body.This is a/my modern
day miracle. My sisters,warriors,over-comers keep the faith , and never give
up the fight.If you are reading this message we are all still in the land of the
living. For those who are struggling I pray for Gods mercy.and that joy will
come in the morning.God bless you all. Merry Christmas, and have a Healthy
, and Happy New Year.Amen
God Bless you too RLN for your remarkable story. Imagine a doctor telling you about not being alive in a year, and here you are with no detectable cancer in your body 9 years later! What does that tell you about doctors and their predictions? And if you ask me, they should never give a person a time period in years to any of their patients!
Yes, I believe in prayer and miracles. You seem to fit the bill in that category RLN. Good for you! Do you ever see this "fortune-teller" doctor anymore? I'd love to see the expression on his face when he meets up with you all these years later.
Have a blessed Christmas RLN! And many many more!
Kats3
If you don't mind me asking what kind of treatments have you had?
I was diagnosed at stage 4 in Feb 2015 with no prior diagnosis. I have bone mets it was just in my spine & sternum but recently has spread to another vertebrae and left hip.
I had 5 months of aggressive chemo which was extended an additional month after my oncologist at the time had to stop my treatment twice because my white blood count was too low.I got two very bad colds/flus, and had to take Neulasta injections to bring my white blood counts up. I also had 4 months of radiation.
Find ways to move safely so your muscles can support your bones. My doctor referred me to a physical therapist who was able to view my x-rays and scans before recommending exercises. As others have said, no twisting or jumping. I use hiking poles for long walks and a lumbar support cushion when sitting. Pain lessened considerably once fractures healed. Good luck .
Markayjay• in reply to
I had the breast/bone met and take the pain patch and norco and the tingling in my feet has been cut in half by wearing Joe boxer boot slippers plus got a dog bed pad to sleep on the couch, I think the dog pad would be less money than at a medical store, what is a lumbar support you mentioned? 🙏🏼🙏🏼🏋🏿
• in reply toMarkayjay
My lumbar support pillow happens to be by "Desk Jockey" from Amazon.
Hi 4muradian!
I also have mets to the bone. I took the Zometa. #6 coming up this week. So far it's been highly effective. I also had Perjetta and continuing with Herceptin for at least a year.
I hope u find the right combo for u. And exercise is important too. And nutrition is important too. No refined sugar. Stevia, coconut sugar or sugar in the raw. Raw fruits and vegetables. And no more Pepsi for those of us with bone mets. 😭 That was the hardest!
God bless and I pray that your oncologist gets the right combo for u...
I also have stage IV breast cancer that has metastasized to my spine. I am on oxycodene, and diclofebac. I get an injection of xgeva monthly. I have been stage IV for 3 1/2 years but have. Even battling breast cancer for 17 years. It is exhausting and can easily get overwhelming. Make sure you have doctors you trust and who listen to you! I go to physical therapy to strengthen my core and I just had 2 epidural shots in my back for pain. I know how hard it is to get up and get moving every day. Depression and fatigue are out enemies along with the cancer. I had to retire on disability from a job I loved . Some days it is very hard to get out of bed but you need to find the reason within yourself. Your family, your friends- whatever moves you to go on. Rest when you need to. I use meditation music to help me relax and medical marijuana also helps with pain and with relaxing my muscles to ease the pain sites. I am glad I found this site. I don't feel so alone now
Hang in there. Be sure to do some excersize. Even small movements. Keeping your muscles tone is essential. I have bone mets in my shoulder, hip, ribs and vertebrae. I try do do as much as I can. Fortunately after radiation the pain stopped. I do get stiff and sore a lot. I am not supposed to do a lot of lifting or bending.
That's excellent advice about exercise. What we all need to do is try to stay as healthy as possible given our condition so that we will be around long enough for a cure or a long-term treatment to be available for us! I even exercised when I was in the hospital for 3 weeks going through a clinical trial for bone marrow transplant in 1999 (high dose chemo followed by my own blood stem cells being infused back). I walked as much as I could and when my immune system was near zero (yes, they made it go that far down on this old treatment), I walked in circles in my room, did leg lifts, did isometric exercises against the wall, etc.) Now I do over a hour of yoga 6 days a week and try to take a 30 minute walk every day. I find it not only makes me feel stronger physically but also helps with the emotional strains of having this disease. I do free yoga classes at doyogawithme.com They have all kinds of video classes, even ones for people who are bed bound.
Why did you need a bone marrow transplant? Did you have metastasis somewhere other than your bones? You sound like you're a very strong woman with a strong constitution. A bone marrow transplant is a very big undertaking! I know that Robin Roberts had one a few years ago but that was because her treatment for her breast cancer caused a type of blood disorder or leukemia. ( She's a reporter on Good Morning America.) I'm curious about your treatment....
Kats3
I had a bone marrow transplant in 1999 as part of a clinical trial for my bone mets (I only have bone mets). In the 1990's transplant had been accepted as a standard of care for metastatic breast cancer, however, adequate research had not been conducted to see if it was any better than regular chemo in stage 4 breast cancer. So when I was diagnosed with mets, my new oncologist had just finished her job as a researcher in bone marrow transplantation. She offered up transplant treatment as part of a clinical trial. So instead of going on the standard treatment for the time (AC or taxotere chemo), I agreed to participate in the transplant clinical trial. About a year after my transplant, the results were in -- Bone marrow transplant was not any better than standard chemotherapy in extending life or saving lives, in fact, it resulted in lower quality of life during and after treatment. Transplant has been shown effective in some blood cancers so it's still being used. I can't comment about Robin Roberts' situation other than she was diagnosed with "Myelodysplasia" pre-leukemia (kind of like DCIS and LCIS is pre-breast cancer). Her bone marrow evidently is not producing the right number and/or right kind of blood cells. So it looks like she will undergo a bone marrow transplant with her sister providing the marrow.
Hi. I believe Robin Roberts went through with her bone marrow transplant at least 2-3 years ago. She's back at work now and looks healthy and wonderful. Lucky for her the sister was a perfect match. She wrote a book about her ordeal which I read but now forget the title of. My radiation oncologist told me that her original breast cancer was over-treated and resulted in a blood disorder and hence she needed a bone marrow transplant.
Do you feel that your transplant helped you at all? Are you cancer free at this time? What medicines are you taking in order to keep progression in check? Also what type of breast cancer were you diagnosed with? I have Lobular, the sneaky one according to my surgeon. Do you feel good?
Right now ( and I hope always!) I have strictly bone mets like you. I'm only 1 1/2 yrs into this metastisis bit. Am currently on Xeloda and get Zometa infusions now every 3 months. I'd like to know what I might be looking at down the road. Is there a drug that worked best for you? And are you still seeing your Oncologist after all these 18 years? I know Stage 4 is chronic but treatable. I guess we'll be receiving medical care for the rest of our lives! Am I right?
I'm asking you lots of questions because you're a long- time survivor and that's so encouraging to me and I'm sure lots of others.
Do you still go for bloodwork and scans? Well, I guess I 've covered just about all that can be asked of you!!! LOL! If you can clarify anything about your treatments over the past years it would be appreciated. You're a role model in my eyes! Thanks for your time......and Happy Holidays to you and yours! Kats3
Your are a true inspiration Amazon Warrior women. Keep on keeping on. I am sure you are giving so many others hope. God bless you
I am so sorry you are bedfast. MMineis mainly in my bones.What treatment are you on?
I hope you're getting either Xgeva or Zometa to strengthen your bones and heal your fractures. If not, discuss this with your Oncologist. You don't want anymore fractures! Kats3
I was diagnosed with stage IV metastatic Breast Cancer in 2011. I was given a prognosis of 3-6 months. It has been 5 years! I'm celebrating!!!! More good news: CT scan last week was clean...no mets to the liver or the lungs!!!
Oh so sorry it has spread to your bones! Write a book or a journal. Everyone needs to know what you are going through! My prayers are with you!
Just checking in to see how you're doing?
I had a pet scan set-up at the hospital. The day before the scan, the hospital called to say I need to signed a paper saying I would be responsible for the $8000. cost. I told them I have SS and another policy and should pay zero. Did you know SS only allows 3 that right, three scans a lifetime?? I had to have a bone scan instead. If this procedure is necessary, how can SS say sorry you used your 3 scans up? I am encourage by the lady who said she has lived 18 yrs since her stage 4 diagnoses.
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