I’m six months into my Ibrance. My legs hurt all the time, I can’t do anything for more than ten minutes and have to sit. This is getting very depressing. My tumor numbers are way down, they can’t find anything in my lymph nodes, but I think the met on my T12 is coming back as it hurts all the time. I also have a pain in the back of my knee, that hurts and they can’t find out what’s wrong. I have osteoporosis and don’t want to take Xgeva and now I’m beginning to wonder if the pain in my legs will go away if I do. I feel like I need a cam but that won’t alleviate the pain in my legs. I’m tired all the time as I only sleep two hours at a time at night, then I’m up for half an hour before I go to sleep. Not sure I can do this anymore. I’m 70 and have never been sick a day in my life. I can’t handle this anymore.
Getting depressed : I’m six months into... - SHARE Metastatic ...
Getting depressed
Hi, I’m so sorry your feeling this way, it sounds like your in a lot of pain and not sleeping must feel so awful. Of course this then impacts on your energy levels and then in turn effects your quality of life in general. I’m not taking Xgeva but I’m on something very similar called Zometa which is given as an I.V. Infusion once a month. It has taken all my bone pain away. I have extensive mets, but for me the only ones which were hurting were my ribs. I also had great difficulty sleeping before I began this treatment. I would have to stuff pillows all around myself to try and get comfortable. I would recommend you try it out…I know that Zometa is also prescribed as a treatment for osteoporosis in people without MBC….so Xgeva might be the same.Hope you find some relief, sending you best wishes.
Zoe xx
So sorry to hear… I was 44 when started all the treatment, trying to juggle being a mum and work. I felt broken… they adjusted the dosage and i went on to 75mg of Ibrance and that made a big difference. Also lots of gentle exercise, loads of water, good healthy food and that all helped. It’s so hard I know but hang in there x
Sharon- you must address the sleep… are you taking anything? Are you ruminating and worrying when you wake? You should take a sleep aid such as ambien or similar… plus a anti anxiety med such as Ativan. You may feel loads better once you are getting the rest you need. Sounds like you are at the end of your rope… so don’t be afraid to take xgeva or zometa… it will help with the osteoporosis and bone Mets.. also the leg pains could be due to whatever it is you take with Ibrance ( letrozole or other Aromatase inhibitor) ask to switch to one of the other ones( aromasin or arimidex) to see if less pain. I imagine they have you on some pain meds?
I told my Dr about the lack of sleep she told me to take melatonin, that doesn’t seem to work. They gave me opioids for pain, that makes me very constipaited. She won’t give me sleeping pills either. I am changing drs next month so maybe the new one will be different. I really get no satisfaction from the one I’m with. She really doesn’t explain anything.
Glad you are switching doctors!
Wow, an article just came out from -- CDC? some reputable medical organization -- advising against melatonin! Your doc is not up on her literature. Good you are switching.
I agree on reducing the dose of Ibrance. That is a very common response to difficulties with the maximum dose, and it seems to work just as well.
What I do for sleeping -- not too often, just to break a bad pattern of waking up after a couple hours sleep, is to take an allergy medication. I take half a Zycam. My docs don't have a problem with it.
-- As you describe your oncologist, I wonder if we have the same one! Mine is similar but more knowledgeable, and has good nurses who help in the breech.
Oh boy, are you in a funk. Tell your doctors about it and get some help. Learn to slow down and relax. We are here for you.
Cheers, June S.
I would get a PET scan. If you don’t have any Mets, get off Ibrance or at least lower the dose. It worked on my Mets, but it was taking me dow with them. Also, medical marijuana can help with sleep and pain. I know I handle everything better if I can get enough sleep. I’m 74.
I do have Mets and I’m 70. And yes everyone keeps telling me to take marijuana so maybe I’ll give it a try!
I have a medical marijuana card and take micro doses of THC with CBD or CBG. I don’t feel useless and besides, when it hits, I’m sleeping. And I sleep so so soundly, something I have never done my whole life. For me, sleep affects my overall mood and attitude.
Google Rick Simpson and read his story. Lack of sleep is the worst! Hugs Chris
Take a break from the meds. Its your body. Listen to your body!
Your cancer might not be back or worse anything that makes arthritis hurt will make bone mets hurt even if they are called stable. Ask your doc about reducing dose of meds your on it might help you feel better and the meds will likely be just as effective. I take the lowest doses of everything. Ask for ambien to help your sleep. Insomnia is awful and very common with us.Wish you the best. Let us know h ow you are doing. ❤🌺❤
I know it's all so overwhelming from time to time. I pray you get pain relief as that will make a huge difference. You are strong. Speak to your onc about your issues or find a palliative doc who can help.
I asked to be referee to a palliative doctor her answer was no! That’s another reason I’m changing, thanks!
You don't need a referral. You can find your own. That's what I did. Many primary care docs are also palliative care docs
I'm so sorry. Things do seem desperate sometimes. I've felt exactly what you're feeling several times over the last 3 years.
First, I think it's great you're changing doctors. Having someone you can talk with and trust is so important.
I think you've gotten sound advice here to discuss lowering your dose. I did just that on Ibrance, and I felt much better. I WOULD NOT LEAVE A DRUG THAT IS WORKING!!! I have only found two drugs that have had any positive effect on my cancer, and I am speeding through treatments. Soon, I will have no options. As one of our wiser members often says, "Ride that pony as far as she will take you!"
Regarding your pain and sleep, I have found a 10mg gummy of CBD helps both my pain and anxiety. (We only have hemp in Alabama but it works)I sleep better, hurt less and snap at people fewer times a day! I am a real lightweight, so you may need to play with the dosage.
I have Zometa infusions to support my bones. Drink a lot of water that day, and you likely won't have any effects at all. It may help the knee pain. If it doesn't, ask for a change in your aromotase inhibitor.
Melatonin may be a good option as well. A lot of literature states it has a suppressive effect on breast cancer, and of course, helps you sleep. Practice good sleep hygiene and give it a try.
I've learned each drug brings it's own bag of tricks. Unfortunately, we just have to find ways to power through. As terrible as they are, they are giving us YEARS of life. My mother was gone 18 mos after her MBC dx. My grandmother made it only 5 mos. Here I am 3 years later, and I'm thinking, with some luck, I'll squeeze out 2 more.
I'm sorry you're struggling. It is a lot to deal with and few people understand. Lean on us, pamper yourself as best you can. Much love, Andi
Thanks so much for your input, it means a lot
I am so very sorry that you are going through all of this and have so much pain and can't sleep. Lack of sleep always makes things so much worse. I definitely would talk to your doctor about these issues. I have also chosen not to take Xgeva because of the side effects, but I do not have a lot of pain, so it has been an easier decision for me not to take it. I was going to start taking magnesium as I heard that can help with leg cramps, joint pain, etc. I sometimes get leg cramps in the middle of the night and in the mornings I am a little stiff. My oncologist said I could take this. I think asking your doctor about a lower dose of Ibrance would be a good idea, too. In the meantime, please don't give up. There must be help for you. Try to stay strong and find out about a solution. Sending you hugs and prayers.
Thanks, I’m going to change drs soon and maybe he will have a different approach than she does. This new dr trained at MD Anderson. I’ll try the magnesium. Hugs!
I take Ibrance and Letrazole I have been told it is the Letrazole that causes it. I take loratadine Claritin for hay fever seems to ease, hope it works for u
I’ve tried Claritin, it doesn’t work for me. Thanks!
I hope you have been able to talk to your doctor to get some assistance. Not being able to sleep is awful and affects us in so many ways . There is no reason for you to have to suffer in this way . Please reach out to your medical team and if they won’t help then your emergency department at your local hospital . Let us know how you are doing .
Luann
I wish you were not so depressed. I was when I first was diagnosed but started buying small books that were so up lifting. My sister-in-law was diagnosed 2 years before me and she started giving me books as well. Then I started reading my Bible on a daily basis and there were so many things that I read every day that helped me so much. There are ways you can work on your depression. I started looking around at other people and so many were worse off than me. I started thanking my God for that. Look at the beautiful days we have to live in. So many things!
Sister Warrior: My heart goes out to you 
I will pray for healing, and treatment that is not debilitating. Please don't give up. Try to stay strong. Can you reach out to a pain management Dr. a Therapist, a local church, and or understanding loved ones. May the GOD I serve keep you strong Amen😇
Hello Sharon, When my MBC returned it was 12 cm mass in my liver , bone Mets everywhere. That was 51/2 years ago. I did IV Chemo 6 rounds then started Ibrance 75 mg. My tumor at that time was 6cm. I have pain in spine, neck and joints. The Xgeva injection I received monthly for two years. I had joint pain worse for two weeks after shot. Now I get Xgeva every third month. I feel your body gets use to it , and it really helps strengthen your bones. I use Claritin to help relieve pain in joints. My Oncologist gives me Ativan to take before bed this helps me sleep so well. I do not feel like l could rest at all without it. Ibrance is one of the best meds they have to shrink the cancer. Try to take if you can. Ask your doctor for a low dose of Oxycodone 5mg to take occasional when joints get really stiff. Try to move around a lot during day, this helps me. The Ibrance and Letrozole shrank my tumor down now to 2cm. Good luck! Hang in there, I know it’s depressing and tiresome at times. Have a good day! Jen
Thanks! My tumors are shrunk, I go in for mris and pet next month again so I’ll know more. I’ve increased my d3 to 5,000 and am taking k2, which helps the calcium get to your bones and also something called Strontium 680 mg and for two weeks now I have had no pain. I still don’t sleep very well. Thanks for your help and take care.
Next....!!!
Yet more scans, and still stable.
LIVING THE DREAM; NYears resolutions in July!
