It will be five years in November since my diagnosis of stage four breast cancer with bone mets. Although my meds have kept me pretty much stable, I'm experiencing severe pain in my left hip, pelvic area and ribs. These are the areas I have mets. I'm taking dilauded and wear a fentynal patch for the pain. There are days it's bearable and days I can barely function. I'm on lexapro for the depression and mood swings, but, I'm finding it more difficult to pull myself out of the depressive funk I get in. I get to the point where I can't take it and wish I hadn't survived this long.
Although people say they understand, they really don't unless they've gone through it.
I'm looking to talk to people who are going through the same thing and who understand the mind set of living with MBC.
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EvaV
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Hi EvaV , I'm so sorry you're feeling this way. Have you spoken to your doctor about this? They might be able to provide you with some solutions to help you manage your pain. I also encourage you to call SHARE's Helpline to speak to a peer support specialist with MBC who understands what you're going through and can offer help and advice. The Helpline number is 844-ASK-SHARE (844-275-7427). I'm also hoping someone here might have some advice, too. Please don't hesitate to reach out to us if there's anything you need.
EvaV, have you called into the telephone support group for women living with mets? SHARE has a group on Mondays at 4 PM ET and Thursdays at 6 PM ET. There are others experiencing what you are...
Oh, Eva, This lousy cancer is so challenging to live with! I remember my worst days! I'd get hit with fatigue that was so severe that I was never sure that I could walk to a place to lie down or even sit...it felt like I needed to lie down right where I was standing, and take a nap for about 10 years! So debilitating...... One of things that has been really hard for me is asking for help! I'm so used to being able to be independent. Eva, I've now been living with this rotten cancer (bone mets) for over 13 years and while I don't have the energy I had before cancer, I cope okay most of the time. It can get better for you, too. Maybe not tomorrow or next week, but there is hope for feeling better. And surviving 5 years with this cancer is a really promising sign!
If you want support and not advice, stop reading my note here. Cause I am going to make some suggestions for you.
Do let your onc know just how awful you feel. Both the physical pain and the emotional pain. I have heard good things about radiation for bone pain. And if you live in a state that allows the medical use of marijuana, you might try that, too. My gynocologist has told me several times that she's had patients with breast cancer use it with success in improving quality of life and reducing pain levels.
Call your onc's office today and ask to speak with your onc's nurse and let them know how badly you are feeling. Don't put it off. Pain is best controlled the sooner we start working on that. You may be asked to rate your pain on a scale of 1 to 10. Give it at least a 7 ! If you aren't already seeing a pain specialist, ask about doing that.
One thing that can be really hard for us is learning to be our own advocates! Many of us are so used to taking care of others and of the day to day things of modern life, and taking care of ourselves is often not what we are used to. But we will have nothing left over for anything or anyone else if we don't take care of ourselves! I tell myself that I have no wiggle room when it comes to that, and I have a self imposed rule that if I even think of calling my doctor or going to the ER, I do it! In the big picture, it is better to do those things a little bit too often than not quite often enough!
Are you able to get any enjoyment from the things that you enjoyed before cancer? Build a daily routine that includes some of those things. You could even give yourself a specific 15 to 30 minute time every day to worry about your health and then put it aside and do something that distracts you, something that you have liked doing.
There is a website called healthjourneys that sells really wonderful CDs and iPod down loads by a woman named Belleruth Naparstek. I love her Fight Cancer audio tape She has a very soothing voice and uses imagry and affirmations. I also have her Surgery set and listening to it has made a huge change in how I feel when I check in for any procedure--and that is positively reflected in big changes in my blood pressure. It's changed from high to normal or even low after I listen to her. She has other audio sets, too. And the price is reasonable.
Know you can write here anytime. Rant, rave, whine away! Sometimes just seeing it in print can help ease things a bit. And we do understand. Many, most, almost all, of us have had rough times! Just hearing the word cancer is life changing....... be easy on yourself and know you are not alone! And please do keep us posted! You will be in my thoughts and prayers. Sending love and warm healing energy your way....... Pam
EvaV, I'm sorry that you're experiencing a lot of pain. Perhaps a pain management specialist can assist you to adjust your medications to help.
Has anyone mentioned radiation to you? Or interventional radiology (IR)? Both of these procedures can be used to control bone pain from mets. IR is not mentioned to patients that often but it can be just as effective as radiation, and since it doesn't invole radiation, there's no dose upper-limit. However, a radiologist is the person who does IR procedures. One of those procedures radiofrequency ablation (RFA) ablates the nerves in the bones that are causing the pain. RFA does this with radiofrequency waves.
I had RFA in the lung, not for pain but to eradicate a breast cancer metastatic lung tumor. The procedure is minimally invasive, and for the lung, parptients are kept overnight for observation. But that may not be the case with bone mets.
Although you've been living with MBC for five years, quality of life is important, and the doctors can help by managing your pain better.
Perhaps others on this board can give you specific input from their own experience.
SHARE has a telephone support group on Thursday early evening for people living with MBC, and several of the women who call regularly have bone pain.
EvaV: I am so sorry that you are feeling as you are...but not surprised. This forum will be a good place for you to express your concerns and find others who face and understand them. May I echo TNBC16 and Joann86 in directing you to SHARE's phone-in groups for women living with MBC? You are a conference call away from a growing number of women who seek support from one another--all facing similar challenges. In addition, try SHARE's Helpline if you want a peer--a one on one call with a woman whose experiences are close to yours. If you have the strength to reach out, you may find some emotional relief in trading strategies and knowing you're not alone. My best to you.
Yes, I echo the others, do talk to your oncologist. I will be 5 years with MBC in December. A year ago I had problems with pain and my oncologist set me up with palliative care, which allows the oncologist to focus on treatment while a nurse worked with me on pain management. The nurse came to my home as often as I wanted. Also, I was provided with a social worker that came to the house, again, as often as I needed. It was all covered by insurance. When pain was no longer an issue, because the chemo was working (yay!), I simply let the nurse know I no longer needed her assistance. Same with the social worker.
EvaB, I don't have bone mets but I have been living with Stage IV Metastatic Breast Cancer for a little over 3 years and your right. People who don't have our disease have no idea the pain and emotions that we go through everyday. You need to talk to your doctor and see about changing your anti-depressant. I take Wellbutrin and Zoloft. I also take Klonopin for anxiety as needed. Sometimes it takes a while to find the right medication for depression. You are not alone. I am here for you anytime. I have severe muscle pain in my back and pain medication does not help at all. The only thing that I have found that helps me is getting massages. I go every 2 weeks. I am highly allergic to Morphine and Dilaudid. They have talked about putting me on fentynal patches but I have been a little skeptical about it. How do they work? Any side effects? God Bless you. I will keep you in my prayers 🤗🙏
When I first had terrible pain from bone fractures in my ribs, spine, and pelvis, I was first put on Oxycodone pills. They made me sick to my stomach, but they worked with the pain relief.
As the pain lessened I was prescribed the Fentynal patches. They relieved some of the pain, but not all. They're mild in my estimation, not for really intense pain.
My Oncologist has given me a prescription for Lidicaine patches now. I like them. They're stronger than over-the-counter pain patches. They stay on 12 hours, then you remove them for 12 hours. Not bad and there IS some relief. I keep them on hand for times when my pain level gets high. Good luck! Kats2
EvaV, we all get like that 2014 started my bone Mets and in spine. The two chemotherapy drugs Affinator and Xeloda did nothing for last 10 months but, give me bad side effects. It has moved to my liver and yet traveled it's straight road up to T5 vertabrea and the T11 it was not n is now covered. They rechecked the oncotype since lympnodes had the cancer in them on the left side this time. And now in my right shoulder too. Got my port a cath put back in and ready to start new drug. Yes, our drugs help us to gain more time. But, side effects and effects of the bones deteriorated under cancer and all the medications is a fine line between what paths we have chosen. It is not a given what our true timelines are so make the best of it. On your good days go out and do something you love just for you. Get a coffee and a good book and read on bad days with a great full length pillow and soft blanket. Wrap up in its warmth and savor that time too. It helps you become whom you are. You are amazing and have found ways to make it this far. Go to get CBD oil and put it right on the hip. Try anything and everything. Try alternative medicine you have wondered about. Do what you can to help extend your pain medication. Take a warm bath, candles and a book with some ALO juice. You're time is precious make it so!
I know exactly how you feel. I have only been living with my bone mets for a year and a half. I usually can get my pain under control with my patch and the break through pain pills I have. What is something you enjoy, you are going to have to do it to the best of your ability. My family is great and my friends and they do help but I have to do things for my self.
I worry about having enough finances to survive at times because my insurance cost is almost half of my disability I get each month. When I get all wrapped up in my worries I try my best to pray and lay it down. I don't know how you feel about prayer but I do believe so that's how I deal with it and just try to move on.
I do have my break downs of crying probably once a week. I am hoping this group will help me. We are different because our cancer is different in our own way. Let's both of us hope this site helps us!
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