Bone Mets Thread
Comments
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Minnie.... when I find an energy source I'll send to you. We can share it!
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Great news on scans Delvzy ! I may be 55 but I love Ed Sheeran!
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Leapfrog. Nice to hear you are feeling well. When you find that energy source let us know. No complaints from me. I’ve had my week off Tykerb and I’m feeling much better. Now I have to call mo and start on very low dose of 1 pill and work my way back up.
Delvzy. Great news. Ed Sheehan is great. When my infant granddaughter was fussy around 5 pm I would put on Ed Sheehan and she would calm right down as we danced around the room.
CloudNine. I hope you hang in there. Pain meds are meant for MBC patients who need them. I have been on and off pain meds. I know we are all supposed to power thru it. Listen to these ladies here. 9 months ago I was convinced I wouldn’t see another Christmas. Three months ago I could hardly walk 2 blocks with arthritis &or bone mets pain. Yet today I am so much better. Take care. Listen to the women here. They are very wise.0 -
Dlb823 wonderful wonderful clip of Ed Sheran thanks so much for sharing it , It brought such a smile of joy to my face ,
Girls we are all 'perfect' just the way we are. Ed Sheran often says he was a weird weird kid with strange red hair, thick glasses and a huge Portwine birthmark over half his face which when lasered off gave him a permanent stutter but his gift and remarkable talent and kindness as a person just shines through and I believe no matter what happens to our 'body' our loveliness shines through. He gives 80% of his earnings to help charities one of them being abused boys in Africa and he rehouses them and builds schools and homes for them
❤️
Jens u will love Ed Sheran. To command an audience of 55000 in Melb with one man and his guitar is an amazing effort
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Girls one more thing I forgot to mention. I have got onto the pure legal Hemp Oil CBD and it has been wonderful for lessening pain ( I take 1 less Endone per day) and removing the anxious depressed feelings I have had constantly in the background since re-occurance. It is imported from Kentucky and you get 1000 drops (100 days) for $120 which is doable .
Z I also go to a traditional Chinese oncology herbalist who practices many of the diet ideas you presented earlier. He believes in heating the body up with warm nourishing foods . Herbal teas that shrink tumours and he also makes up teas for energy which really work. Most days I only need a 30 min nap not 2-3 hours like I have needed previously . I also have accupuncture from him in the ribs which is where most of my pain started and continues
Any way girls food for thought
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Thanks Delvzy and everyone! I am soaking up the info and experience with gastric disorders I am getting here and by PM. As much as I love to research, not much interested in studying this damn abdominal crap. I just want it to go away.
On hour 64 of my clear liquid diet. A little shaky but I have good energy and alert for the first time in a while. Went for a 50 minute walk expecting to drag myself through it and I was surprisingly peppy. Some issues resolving, some are not. I feel better, but my colon still cramps after I drink.
>Z<
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Girls you are all wonderful.
Cloudnine I'm sorry to hear about your pain but not taking pain meds won't help to solve our problems. You need to be strong for yourself and for your love ones. They want to see you many more years without pain. I'm going on Monday to get CBD oil ask your onc there is legal ways to get it. I have a coworker who never talks or smiles so yesterday she came in my room with big smile and gave me a big hug. I was confused and then she said to me" I have been grumpy person all my life because I always think about stuff and I get upset. Then I think about you and what you are going through but you always smile and so nice to everyone. Now I changed I just want to be like you ."That just made my day. Unknowingly I changed sobodys life. I'm saying this cloudnine because you can't give up. You don't know how many people around you admires your bravery.
I love that song. I can listen it over and over lol.
I love Taylor Swift I'm going to her concert in August
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Laka, and other ladies, I would love to know of experiences with cbd oil. I just started on 5%, couple of drops 2 times a day. New to this, but willing to give it a chance if it helps with pain???
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I have been on it 2 weeks (pure Hemp cbd oil) it's legal to import use and sell in Aust just not grow . I take the strongest I can get with is 750ml and I take 5-6 drops under the tongue twice a day. The key is to keep it under the tongue for at least 1 minute and not have any food or drink 20-30 mins before and after. The main thing I have noticed is slightly less pain meds needed, more energy I meditate 30 mins per day now not sleep 2 hours and I am definitely happier calmer and less stressed. This is the happiest and calmest I have felt since re- diagnosis
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I will let you know what I will find out, I have an appointment on Monday
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Z, hoping you are holding up well with your liquid diet and that your GI symptoms are improving. So much to deal with on top of cancer...
Laka, what a great story about your coworker.
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delvzy, I take a whole medicine dropper full of cbd and try to hold it under tongue for at least 2 mins. Then I absolutely have to swig down an ounce or two of juice or I just gag and it stays in my throat and tastes horrible. So far it's working...no seizures from my 20 plus brain mets.
I use 20:1 cbd to thc concentration from Treat Well brand.
L
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Delvzy and Lita, thank you for the pot info. I live in California where it is legal, but I have not had to go this route yet. Still, I am keeping notes for whenever I do need it. Sometimes, just walking down the boardwalk by the beach provides me a little hit! lol
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IntoLight - CBD oil has none of the mental effects associated with marijuana. Thats why its legal everywhere. You can order it online and give it to your kid. The product I linked to was developed for children with epilepsy. It does come from cannabis, so growing the plant is another business entirely. However, there are a lot of legal products from "hemp."
Piggy - Thanks for asking. Significant improvement so far with my abdominal issues on the clear liquid diet. Amazingly my lipase did drop from 480 to within normal range (300), after 3 days on no solids. Could be no solids, could be other things like not eating fats or the anti-inflammatory foods (beet juice, blueberry juice, etc.). Whatever the reason, improved blood work on Saturday PM and improved energy after 3 days.
I am going to keep going with the clear liquids. It is not hard and my lipase is at the high end of normal. Starting Tuesday, my plan is to add soft food of distinct types slowly and watch my blood work and how I feel. I may start with liquids, just not clear liquids, like almond milk and juiced vegetables.
I still have some abdominal pain and diarrhea, but pain and bloating is less. The feeling of being exhausted and sick is lifting. I went for a hike yesterday expecting to drag myself the whole way and motored right along. Missed a nap and cleaned my airbnb. A little less peppy today. Resting more than yesterday but still improved.
Many drugs disrupt pancreatic function. My doctor showed me a list and it included so many drugs that we take. If you are having abdominal issues, its important to look into it. It may be indirectly cancer related but there are solutions.
>Z<
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zarovka what kind of liquid diet are doing? Did someone recommend you
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Hooray, for CBD and no seizures, Lita!
Z, glad to hear you're doing better.
Hugs to all.
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Laka - I have a collection of abdominal issues that could be caused by almost anything including ... cancer. However, it turns out my pancreatic enzymes came back slightly high in my bloodwork. This indicates an inflammed pancreas (pancreatitis). My doctor suggested a clear liquid fast.
Many things, including the medicines cancer patients take, can inflame the pancreas. When the pancreas is inflamed, the production of enzymes becomes dis-regulated. These are the enzymes the body uses to break down carbohydrates and proteins and fat. When the pancreas starts producing top much of these enzymes in a dis-regulated way, it starts breaking down its own tissue, causing more inflammation, and more dis-regulation of enzyme production.
If you catch it early enough, you can stop the cycle by not eating any solids for a short period. The pancreas doesn't see any solids coming down the pike, so it stops producing enzymes altogether, and the inflammation dies down. Hopefully when I add back solids, the pancreas will wake up from its nap, refreshed and producing enzymes properly.
The clear liquid diet can calm down a lot of gastric issues. It's not a bad thing to try when things are out of whack. Depending on what is going on it may or may not be the first thing to try. I am sure that I have more going on than pancreatitis, but with the bloodwork results we got, the doctor wanted to start by getting my pancreatic enzymes back down. Seems like a reasonable plan and we're getting somewhere. Yay.
>Z<
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Hi all,
For those of us with chronic diarrhea and related problems...what seems to work for me (and a lot of other people, from the stories I’ve read on line) in changing the formation of stools is an increase of calcium which is obtainable from foods, or by supplementing with calcium citrate.
I don’t completely understand the mechanism, but this morning I had a perfectly formed stool after having consumed a grilled cheese sandwich yesterday. It reminded me of how I stopped chronic diarrhea one year ago by supplementing with calcium, but I had forgotten...
Maybe it has something to do with the suppression of estrogen and osteoporosis...i'm not sure....
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Z- Glad to hear you are feeling better! Gut issues are so challenging.
Lita- Yay to seizure-free Living
Hope it's a good week for the group
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Miaomix - Thank you. I'll look into calcium. Lots of pieces to this puzzle.
>Z<
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I would like to add something to the chronic diarrhea discussion as well: my DH used to have chronic diarrhea. It was caused by too much food, too spicy, too greasy, too much artificial sweetener, too much alcohol, too much stress, to much sports and many other things. I was quite used to him disappearing very quickly in the oddest situations. His doc was not concerned, but after my dx he consented to send him for a colonoscopy just to be on the safe side. Thankfully, nothing was found. The doc doing the colonoscopy prescribed him some probiotics capsules. My husband did not believe that some small capsules would help him after basically decades of chronic diarrhea, but he took them. A few days later, his diarrhea was gone and did not return. He told me, if he had just known this...
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yes, NettaGER, Thank you for sharing how probiotics benefitted your DH. They are part of a beneficial solution to the puzzle, although my gastroenterologist at MSK discounted their benefit outright, he said: “they can’t hurt”
Unlike people with IBS or crohne's disease, the cause of our digestive problems are directly correlated to the cancer meds that we must continue to take to stay alive...therefore the problem tends to become chronic with deteriorating condition unless solutions are found.
My doctors are all eager to medicate the symptoms with other medications that in my option will only perpetuate the problem, as even aspirins can lead to stomach ulcers. For me the solution is to be found in the support from functional doctors and their natural medications that have negligence SE.
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Thank you dears for your support to understand my mother case by your comments ,,, can i ask you more about zometa side effects as her Dr gave her the first dose from 3 weeks and she is still suffering from fatigue and vomiting and also pain come and go in the back so i want to ask does this symptoms from zometa through all this weeks or from radiotherapy?
Thanks alot.
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Hello All....I'm so excited to share this with you. I've met Dr. Burkard. He is an amazing researcher and I had the privilege of meeting him recently and tour his research lab. The survey takes just a few minutes. Research not Ribbons!!
I will be cross-posting, but please share with any Facebook group you may be involved with.
OUTLIERS — EXTREME LONG-TERM SURVIVORS WITH METASTATIC CANCER
Why do some people live for over a decade with incurable cancer?Can others become extreme survivors?
We are looking for adults with metastatic breast cancer to help us find out!
QUICK LINKS
ABOUT THE STUDY
We will identify long-term survivors with metastatic breast cancer and understand what has allowed them to be exceptional survivors.
The purpose of this research is to identify habits, medical care, and genes that help people live with cancer for a longer-than-expected time. We will first ask you questions about your medical history, your treatments, your habits, and your diet. After the survey is complete, we will re-contact some very long-term survivors who will have the option of having their genes tested. Genes are the material passed from parent to child that determines the make-up of our bodies. Tumors also contain genes that can be altered through mutations, or changes in genes. This research study hopes to identify genes in outliers and in their breast cancers that differ from other patients with a similar type of cancer.
Visit our eligibility criteria page to take our eligibility survey! This survey will determine if you are eligible to participate in the study.
ABOUT THE PRINCIPAL INVESTIGATOR
Mark Burkard, MD, PhD is a medical oncologist who specializes in the treatment of breast cancer.He is an Associate Professor of Medicine in the Hematology-Oncology section of the UW School of
Medicine and Public Health. His goal is to prevent or cure cancer, or help people live better and
longer with cancer.CONTACT US
If you have questions regarding the study, eligibility criteria or additional information, we encourage you to contact the study team.
Study Coordinator Contact: Kayla K. Lemmon
Study Coordinator Phone: 608-262-42850 -
Marlene89: I am not sure, if the SEs you describe are actually from the Zometa. Zometa usually causes flu-like symptoms especially when administered the first time, but they will fade after a few days. I have not yet heard of vomiting. Fatigue and pain may have various reasons and cannot be assigned to Zometa only.
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LindaLou- Can you also post your link to Dr. Burkhard under its own thread? That way it won't disappear into the archives of these active threads..
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Lindalou, thank you for posting the study information. I responded. This is the second exceptional responder trial I will be participating in (if I meet this one's criteria), and I am happy about that. I figure the more researchers study me, the better.
I agree that you probably should make a dedicated thread for this so it doesn't get lost so easily.
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Hello! I just had my semi-annual CAT Scan and Nuclear Bone Scan today. I' ve been happily stable all this time (3 1/2 years) when today the radiologist relayed to my nurses that there were changes in ribs and in my thigh. I have an upcoming appointment with my onc. What can the radiologist have meant? Has there been progression? Still in bone? Or, is this the beginning of the end? Thank you for any information or advice.
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NettaGER - I am huge probiotic fan, but given the extreme situation the meds and radiation and stress, I have to rebuild my diet from the ground up as well. I got an A on the clear liquid diet from the doc today. Pancreatic enzymes remain normal. Now on to dealing with diarrhea. I have graduated to quinoa and over cooked vegetables for the next 4 days. Or rather I can add these to my anti-inflammatory blue and red liquids and bone broth. Small meals at least 2 hours apart. I figured out how to make quinoa in an Instant Pot in one minute this evening. Eating solid food as I write. Amazing how wonderful it is.
Marlene - my understanding is that Zometa reactions last a 2-3 days at most. That was the case with me. I later developed fatigue and pain and gut issues which had to be diagnosed and treated separately. I worked with a competent primary care physician. I don't think these symptoms will go away like that little burst of a zometa reaction. And not everything is cancer.
Lindalou - Love it.
>Z<
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Thank you Z for your comprehensive explanation as always. I'm glad you're beginning to feel a bit better.
NettaGer....thanks for mentioning probiotics. My husband has what he calls IBS and also disappears many times a day! I'll see if I can persuade him to try some. I'd forgotten about them with all that's going on with me so I'll buy some for myself as well.
Lindalou...thank you for your post. I'll definitely be investigating it. I agree with lulubee that you should start a new thread for it. I'll PM you.
Kendrasue...I wouldn't like to hazard a guess about the radiologist's comment and I really think it's best to not worry until you've seen your oncologist. It doesn't pay to stress over a comment like that which I don't think should have been relayed to you by the radiologist via the nurses. My opinion, if it counts for anything, is that unless your oncologist has arranged for your nurses to give you news, it should be left to the oncologist. And, please, please don't think of it as possibly "the beginning of the end". My strong belief is that if we start projecting into the future, all we're doing is causing ourselves worry, which is futile and causes stress and illness. I like to leave thoughts like that alone until I'm given concrete information by my oncologist. It makes my life more bearable. Sending you a big hug and my prayers and thoughts.
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