Metastatic breast cancer, in bones: Trouble eating

Posted by baby99 @baby99, Tue, May 21 7:25pm

Original breast cancer was in 2007. In left breast but I opted for both breasts to be removed. I was DX’s with medistatic breast cancer in 2018. It is in breast bone and two ribs. Dr. put me on femara and kisquil? Did not tolerate kisquil. Could not eat. Dr. took me off kisquil and left me on femara. I started marijuana RSO 2 months later. My numbers dropped each month,4 months later almost down to normal. I have been on marijuana for a year and have had a steady decline in my ability to eat. In researching online I have found that this is normal for people with other digestive problems. I have had GERD and IBS since my 20’s, I am now 75. I have lost 45# in last year. Marijuana slows down the digestive process. I do not get hungry, ever. I make myself eat protein drinks so body has something. Problem is getting worse and any food I eat now make me get upset stomach and most times diarria. In last two months my cancer #’s have climbed 5 points. Dr. says my remission may be over. He wants me to go on Ibrance if #’s keep climbing. not sure I want to do that. I have struggled with stopping marijuana in the hope that my stomach will come back to normal. Fear that my cancer will get worse if I stop has me scared. After a lot of praying, my husband and I have decided that I will slowly back off of marijuana until totally off. Wondering if any one out there that has problems like mine or any advice for me. I have seen two great grand children born and added two more grand children in years I was cancer free, thank God for that joy. I tell myself that I am not afraid to die, my faith is strong and God and I talk all the time. Yet I felt fear when Dr. said remission may be over, and the same fear for stopping the marijuana. I know I have to do this but it is hard. Any help or advice or just being able to talk online with others that have problems will be a help to me. I should mention that I am also a care giver for my husband who has COPD and other lung problems. He is on O2 all the time and can do very little. Thank you

I am very sorry you are struggling so. Cancer is so cruel. I wish I had some suggestions that could help, but all I can offer is my well wishes.

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I have bone mets, also, but I have not taken either of those medications. I do know that my oncologist suggests a low dose steroid to increase appetite. I know steroids have their own set of side effects, but perhaps you could try a low dose for a limited time and see if it helps. I have done this on and off throughout my chemo treatments for the last year and a half and it definitely increases my appetite and energy. I hope you find a solution!

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@lisman1408

I am very sorry you are struggling so. Cancer is so cruel. I wish I had some suggestions that could help, but all I can offer is my well wishes.

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Thank you, Peg

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I have started my journey to get off Marijuana. Not a good start. Have shakes today, took half dose last night. Maybe need to go slower. Has anyone else gone through this? I forgot to mention in original message that I also have very bad fibromyalgia, 20 yrs. So my immune system is compromised already. I don't take anything for pain because I get side effects from meds. Should have known that I would not be able to take maijuana but wanted to get cancer numbers down. It did that, I just can't take it anymore. I need to eat. Thanks

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@michsnyder

I have bone mets, also, but I have not taken either of those medications. I do know that my oncologist suggests a low dose steroid to increase appetite. I know steroids have their own set of side effects, but perhaps you could try a low dose for a limited time and see if it helps. I have done this on and off throughout my chemo treatments for the last year and a half and it definitely increases my appetite and energy. I hope you find a solution!

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Hi @michsnyder and @baby99, welcome to Connect. I want to make you both aware of other discussions that you may wish to follow and where you can also connect with members like @rae3 @wandering @saltis @elvandi @karenatmayo who share their experiences with bone mets.

– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/
– Bone Metastasis in Pelvic and Spine https://connect.mayoclinic.org/discussion/bone-cancer-in-pelvic-and-spine/

Mich, how is your appetite and energy levels at the moment? Do you find you have to schedule meal times to make sure that you get enough to eat?

@baby99, how are you doing? Have you talked to your oncologist about your use of marijuana and your desire to no longer use it?

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@colleenyoung

Hi @michsnyder and @baby99, welcome to Connect. I want to make you both aware of other discussions that you may wish to follow and where you can also connect with members like @rae3 @wandering @saltis @elvandi @karenatmayo who share their experiences with bone mets.

– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/
– Bone Metastasis in Pelvic and Spine https://connect.mayoclinic.org/discussion/bone-cancer-in-pelvic-and-spine/

Mich, how is your appetite and energy levels at the moment? Do you find you have to schedule meal times to make sure that you get enough to eat?

@baby99, how are you doing? Have you talked to your oncologist about your use of marijuana and your desire to no longer use it?

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Thank you, Colleen! My appetite waxes and wanes, but it is generally ok. I do find I fare better when I am on a schedule. I still work full-time so during the week, I am a lot better about eating regularly starting with protein smoothies in the morning with fruits and vegetables. My energy level is really suffering lately which is generally my biggest complaint, because I haven't been able to keep up with exercise, housekeeping, etc., as well as I would like. I do a lot of yoga and meditation and am just trying to remember that it is ok to ask for help and that everything doesn't have to done right this minute or perfectly all the time! I'm fortunate to have a wonderful team at Mayo to check in with once or twice a year and a fabulous local oncologist and cancer center at home! I'm very optimistic about much of the developing research and clinical trials for MBC, specifically, TNBC, like mine!

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@colleenyoung

Hi @michsnyder and @baby99, welcome to Connect. I want to make you both aware of other discussions that you may wish to follow and where you can also connect with members like @rae3 @wandering @saltis @elvandi @karenatmayo who share their experiences with bone mets.

– Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/
– Bone Metastasis in Pelvic and Spine https://connect.mayoclinic.org/discussion/bone-cancer-in-pelvic-and-spine/

Mich, how is your appetite and energy levels at the moment? Do you find you have to schedule meal times to make sure that you get enough to eat?

@baby99, how are you doing? Have you talked to your oncologist about your use of marijuana and your desire to no longer use it?

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Thank you, Colleen My oncologist know about marijuana use. Said patient should be able to seek any care they want. I see him in 2 weeks. I am off marijuana but so far not eating any better. Trying to make smoothies with protein in them but even they are hard to get down. Not sure where this is going. Dr. has said to call for local pallitive care. Will do on Monday. Hate this. Want quality time for days I have left. I know my fibromyalgia plays a big part in not letting meds work as should. Just really lost right now and feel like drowning in stress. With my husband counting on me also, it is very hard.

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Praying for you in your suffering x

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I found out yesterday that I now have osteopenia in my back and hips. This is a side effect of hormone pill I am on, Femara. I also had this happen my first time around with cancer. They were able to heal over several years with diet and meds. It is worse this time because of my age. I have lost 1 3/4 inches of height over last 2 years. Lots of back pain and loss of balance. I have gone on natural diet so I can get the nutrition that I need, but I can eat so little that don't know if I can do any good. Have decided to tell doctor that I want no more meds. until my stomach is healed enough so I can eat right again. I am tired of feeling like I have the flu all the time. I hope he will work with me on this. Anyone else with this problem? Went with husband to his lung doctor and his lungs are now down to only 38% function. so dealing with this also. My stress is very high right now and is not helping me heal in any way. Just lost right now, but fighting as hard as I can. Thanks for listening

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@baby99

I found out yesterday that I now have osteopenia in my back and hips. This is a side effect of hormone pill I am on, Femara. I also had this happen my first time around with cancer. They were able to heal over several years with diet and meds. It is worse this time because of my age. I have lost 1 3/4 inches of height over last 2 years. Lots of back pain and loss of balance. I have gone on natural diet so I can get the nutrition that I need, but I can eat so little that don't know if I can do any good. Have decided to tell doctor that I want no more meds. until my stomach is healed enough so I can eat right again. I am tired of feeling like I have the flu all the time. I hope he will work with me on this. Anyone else with this problem? Went with husband to his lung doctor and his lungs are now down to only 38% function. so dealing with this also. My stress is very high right now and is not helping me heal in any way. Just lost right now, but fighting as hard as I can. Thanks for listening

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Oh @baby99, that must've been a blow to hear yesterday on top of everything else. Did you get a chance to call about local palliative care? I highly recommend palliative care. They are trained specialists in symptom management and can help you not only deal with the effects of osteopenia, pain and nutrition, they can help you with dealing the stress. This is includes that stress you feel about your husband's health too. You are bearing a heavy load.

May I ask, is your oncologist visit in 2 weeks at Mayo Clinic? If yes, which location. I can possibly suggest additional resources at Mayo that you might find helpful. If no, where is your cancer center? (Only answer if you're comfortable sharing.)

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@colleenyoung

Oh @baby99, that must've been a blow to hear yesterday on top of everything else. Did you get a chance to call about local palliative care? I highly recommend palliative care. They are trained specialists in symptom management and can help you not only deal with the effects of osteopenia, pain and nutrition, they can help you with dealing the stress. This is includes that stress you feel about your husband's health too. You are bearing a heavy load.

May I ask, is your oncologist visit in 2 weeks at Mayo Clinic? If yes, which location. I can possibly suggest additional resources at Mayo that you might find helpful. If no, where is your cancer center? (Only answer if you're comfortable sharing.)

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Thanks Colleen, Yes both of us signed up for palliative on yesterday, June 4th. I am hoping that it will help with all going on with us. Stress is my worse problem now, I know it is my eating problem from problems over years with GERD and IBS. I am hopeful that they can help some. Still trying more natural foods, helping some but still not enough food being eaten but still no hunger. Have monthly labs on Friday. Worried numbers will be high I feel stressful already. Some days I am my worse problem with how I am not handling all this. Pray daily for help. My appointment is at local cancer center next Monday., and worried doctor will not be happy with decisions I am making, but it is my life. Will let you know.
Thanks for giving me a place to vent. My best friend passed away of pancreatic cancer a couple of years ago and I miss our daily contact and leaning on each other to get through bad times. She got me through my first cancer and could make me laugh no matter how I felt. Could use that now but mostly tears around here now. Today is my 76th birthday and I feel every year. Not much joy anymore. No Golden years in this house. Thanks

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@baby99

Thanks Colleen, Yes both of us signed up for palliative on yesterday, June 4th. I am hoping that it will help with all going on with us. Stress is my worse problem now, I know it is my eating problem from problems over years with GERD and IBS. I am hopeful that they can help some. Still trying more natural foods, helping some but still not enough food being eaten but still no hunger. Have monthly labs on Friday. Worried numbers will be high I feel stressful already. Some days I am my worse problem with how I am not handling all this. Pray daily for help. My appointment is at local cancer center next Monday., and worried doctor will not be happy with decisions I am making, but it is my life. Will let you know.
Thanks for giving me a place to vent. My best friend passed away of pancreatic cancer a couple of years ago and I miss our daily contact and leaning on each other to get through bad times. She got me through my first cancer and could make me laugh no matter how I felt. Could use that now but mostly tears around here now. Today is my 76th birthday and I feel every year. Not much joy anymore. No Golden years in this house. Thanks

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So, last night I was in ER for a complete shut down of my renal system because I am not drinking enough liquid. I pray I have not done damage to my kidneys. I have had my kidneys shut down multiable times with my first cancer and with surgery's. over the years. So now I start over with this journey I am on.

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Hi @baby99 Caner does suck. I was diagnosed with BC in June 2016, and MBC in the bones in September 2017. I was on Ibrance from 18 months. I did great on it. No major side effects. I just went off of it because I had more spread. But it gave me 18months of feeling good and keeping up with my 3 year old daughter. I have also tried Marijuana off and on for pain and stress. I don't have the GI issues you mention above, but it did work great for stress relief. . I do have a lot of pain though-tout on body so i take percocet everyday, and it works great for me. Best of luck on figuring it all out and what the right make of of drugs are for you.

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@baby99

Thanks Colleen, Yes both of us signed up for palliative on yesterday, June 4th. I am hoping that it will help with all going on with us. Stress is my worse problem now, I know it is my eating problem from problems over years with GERD and IBS. I am hopeful that they can help some. Still trying more natural foods, helping some but still not enough food being eaten but still no hunger. Have monthly labs on Friday. Worried numbers will be high I feel stressful already. Some days I am my worse problem with how I am not handling all this. Pray daily for help. My appointment is at local cancer center next Monday., and worried doctor will not be happy with decisions I am making, but it is my life. Will let you know.
Thanks for giving me a place to vent. My best friend passed away of pancreatic cancer a couple of years ago and I miss our daily contact and leaning on each other to get through bad times. She got me through my first cancer and could make me laugh no matter how I felt. Could use that now but mostly tears around here now. Today is my 76th birthday and I feel every year. Not much joy anymore. No Golden years in this house. Thanks

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Hi @baby99, how are you doing today?

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Hi, Colleen Haven't been on because of my many problems. I am doing ok, but my kidney function has been effected by shut down. #'s have come up some but still showing stress of shut down. So lots of water and lot of prayers. Had a scare today with husband. He choked eating supper and could not catch a breath. He finally coughed up the piece of meat, but it was hard to watch when I know more of the same is coming. Doctors, cancer and regular have warned me that I am heading for a break down if I don't get a handle on my life. I am going to call palliative care to see what help I can get right now. My cancer #'s were the same as last month, at 44. I am starting on my natural diet to see if I can get my IBS under control. Thank you

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