My oncologist wants me to start this. I’m already in so much pain in my hips I don’t want any more pain. I can hardly walk five minutes and I’m out of breath and the pain then is so excruciating I have to sit.
He lowered my Ibrance medication to 100 mg now he wants to do this? I have blood clots in my lungs and he has put me on Eliquis.
I’m not sure about any of this anymore and I’m about to give up and quit taking all my medication. I am very depressed. I’ve seen four drs lately and they all have a different opinion of my progress.
thanks for listening- sharon
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Sharon0122
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I would write down all your concerns and as many relevant questions as possible and make another appointment with your oncologist. I would request the last appointment for the day so you don’t get rushed out the door because of waiting patients. Based on what information you glean, you can opt to follow the advice, ask for a Pan B or say you need some time to consider your options. 🌸
Hi, Sharon, Looking back, I see you have been depressed much of the time. Are you on an aromatase inhibitor (letrozole, anastrozole)? The can cause bad pain in the hips -- and depression
Do you know the source of your pain? Bone mets or medication? Do you take anything for the pain?
I have had some of those down days lately, when it hurts so much to get out of bed, I can't face it. For me, though, ibuprophen helps a lot.
Goodmorning Sharon so sorry to hear you are feeling so depressed. I'm on Letrozole and I had A zometa infusion. I felt a little strange the day after and ran a temperature and the pain in my joints are not bad anymore. Its my understanding the Zometa is to help your bones. Don't give up that's what the Devil wants you to do. You try putting your faith in God and ask him to help you have the strength you need to survive. Find something to entertain your mind. I am praying for you to have strength and comfort to cope and live. God bless 🙏
Amen to that! I have been healed before; I had lower back pain and was moving about the house like a crab for 2 weeks, then I got some good news one day in an email about people being healed at an apartment complex where my pastor and some friends went to minister to a couple and I got so excited reading the news, I placed my own hand on my back and prayed something like this, "Jesus, I know You are no respecter of persons for Your Word says so, what you have done for one you will do for another! Please touch and heal my back as I lay my hand there, ty Lord and amen!" Well, the pain instantly left and I jumped up from my computer and ran and told hubby who knew the pain I had been in for weeks! The bible doesn't mention laying hands on yourself specifically but there is James 5:14 you should read. God bless you with healing, health and strength to carry on in Jesus name, amen! Praying for you! <3
I'm sorry to hear how much pain you are having! I can tell you that I had "extensive" bone mets (in spine, pelvis, shoulder blade and a rib) when I was first diagnosed with BC, back in March of 2004. I was on Zometa for several years and it never caused me any pain. It helps strengthen our bones and helps the bone mets heal. I've gotten pain around the area where my lower back and right hip meet, and Lidocaine patches have gotten rid of the pain. Those are sold without needed a prescription and come in at least two different sizes. I turned out to be allergic to Zometa and my onc worked with that by giving me IV benedryl and hydro cortazone , half dose of the Z and longer infusion time. I hope you can get some relief of that pain....hard to feel at all like doing things when we are in pain! Sending love, healing thoughts and cyberhugs {{{HUG}}}
I've had good results with Zometa. It is used to strengthen your bones. I had bone mets in my spine and hip. I take a daily Claritin and Alleve for arthritis. Give the Zometa a try, you can always decline the next infusion.
Sorry to hear you are suffering. Everyone is different but all I can say is six months ago I spent most of my time lying down due to bone pain. Started on Ibrance, Letrozole and Zometa. And yes the side effects of starting medication made the fatigue and body pains worse. But over time the side effects lessened and the pain got a lot better. I hope it gets better for you. One thing I noticed with zometa is the first infusion had the worst side effects but drinking lots of water before and after really helped. Now I’ve had three infusions and don’t notice side effects. Stay strong and know prayers are coming your way.
Somehow that seems quite insane...I hate to say it. I would tell your oncologists this and push harder on it. So you have to be in pain because you are on another drug? Can they see if the pain is from muscle tightness? Something to relieve that? I cannot believe that nothing can be done! Is the pain doctor at a cancer center? Where do you live?
I live in a small town in Oklahoma, there is a cancer center here that cares for three different cities. My oncologist was at MD Anderson before coming here. I had two steroid shots in my back and that was the first question they asked are you on blood thinners? I wasn’t at the time, then I had a scan and there they were clots in my lungs. I flew to AZ in the fall and upon my return had a huge black and blue spot on the back of my leg, guess it took til January for them to move to my lungs. My father died from DVT so I guess I inherited it. We’re supposed to go to London in the Spring, May have to cancel. Good thing I bought insurance on the trip!
I'm praying you find some relief. My onc wants me to go on Zometa too. It strengthens and is supposed to help heal. It is an infusion. Xgeva I believe does the same thing but is a shot. Talk to your onc, the one of the 4 you trust and explain your concerns and depression. Sometimes all this is overwhelming! There needs to be some agreement among your oncs. You can also speak to a palliative care doc for pain management.
lots of great advice here already so I don’t have anything new to share, but wanted to let you know that I have also been on this drug combo of letro and ibrance and I’ve had 5 zelodronic acid infusions in the last year with no side effects at all. I also take a daily calcium supplement and vitamin D, both ‘prescribed’ by my oncologist (I say prescribed even though they are over-the-counter.
All the best with your decision. I hope it brings you peace of mind 💞
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