Bone Mets Thread
Comments
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Milaandra I find the food thing so hard. I used to own a company that imported cheese from Europe I would go to wineries and talk about cheese and wine pairings etc. Cheese and wine were my main foods. Loved baking having three children I baked a lot and butter and salt were my favorite condiments. Change is always hard I felt lost. Going into the grocery store after my diagnosis I would cry because I didn't know what to buy. Everything was all of a sudden bad for me. I lost twenty pounds....and looked like shit. It took me six months to learn to feed myself again.
Your so right it goes in baby steps then they change to larger strides. This disease will most likely be my end but I will do what ever I need to in the mean time to help my body fight it. I wish that for us all.
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Gutted. Holley Kitchen died this morning. I have scans next week. I'm taking a break. I will keep everyone in my prayers. I'll be back sometime after my scans. XO
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I believe in ketogenics, so grass-fed butter and cheese are my friends
What's wrong with salt?
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txmom, oh my God I can't believe this happened so quickly. I feel so sad about this, I can't even wrap my head around it. Best of luck on your scans, sending positive thoughts your way. Mine are coming up too, February 1st and 10th and the anxiety is already creeping in.
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Nothing is wrong with salt unless you pour it on like I used to.
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Txmom that's devastating news. My thought are with her family and friends terrible news...
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Hindsfeet - Yikes! Glad they were able to give you some relief from the unsteadiness and reduce the number of tumors with no side effects! sending good thoughts your way!
Txmom - Such sad news about Holley...so sorry for her family!
Patty - hope you feel better soon!
The quilts are beautiful and the tears are totally understandable! Those acts of kindness are so touching in the middle of BC uncertainty. Knowing that people do care is a reminder that our lives matter to someone.
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Wendy, I was worried that some new research had come up that I had missed! I do stick to sea salt or pink Himalayan salt, and I'm pretty moderate with it in general.
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Yes, hearing about Holley this morning wasn't the best thing for me. Not managing so well. Still no word from my onc. Struggling majorly with pain management. I'm basically in pain 24-7. I need to stir things up a bit. I have a pain management appointment on Jan 25th, so let's see what they say. I also sent the pain management doc my MRI so he can use that as well.
Hoping to hear from my onc today but who knows at this point. One foot in front of the other. Just get through the day. At work today. Trying not to miss work as I have a feeling I will be going out on disability soon.
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Hi Ladies,
Once again, I can't tell you how nice it has been to be "part" of this thread since my stage IV diagnosis a few weeks ago. To give you all an update (I am the tragic one diagnosed with bone mets during pregnancy) - after the bone biopsy confirming mets (ER+/PR+, Her2neg), I had more MRIs which showed 2 small spots in my thoracic spine (in addition to the spot in L4). I was having some leg pain but my femurs both look fine as did my cervical spine. When I met with the Oncologist and the MFM, they were very encouraging. The Onc still considers this "oligometastasis" and said that the tumor is very well-differentiated and indolent. One option was to start taxol (which I had previously) and another option was to do "aggressive surveillance" (i.e. nothing) for now, rescan the first of February to see what this thing is doing, repeat tumor markers (which were essentially normal) and go from there. As crazy as it sounds, I trust him so much that I chose the surveillance route. Now, I am out of my PJs (which I basically have lived in since they told me I had mets) and back to work. I figure a little denial for the next few weeks won't hurt. I feel fine and am not in pain so that is a plus.
I am intrigued by all of the conversations surrounding diet. I never really changed my diet too much after the initial diagnosis although I don't eat tons of sugar, etc. BUT, now I feel more compelled to really clean up my act. I just ate 2 cups of raw broccoli which in hind-sight may have been extreme, but I'd love to hear more from you ladies about what types of dietary modifications you have adopted.
Thanks again and I hope everyone is having a great day (and a much warmer day than we are having in the frozen Minnesota tundra)!
Annie
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Good morning ladies,
You might want to check out eatingwell.com for some recipe ideas for healthy eating. I found a recipe for minestrone soup that sounds really yummy.
Annie - your quilt is beautiful and yes it does make you feel much loved when someone goes to the effort to make one just for you.
momma - you said that your daughters co-pay is a few hundred dollars a month. Have you checked with Pfizer to see if she qualifies for co-pay assistance? Even though you have insurance, if your co-pay is still too much for you there is help. I got script insurance this year and am having to go this route myself, because my co-pay is $3,200.00 a month. My monthly disability isn't even half of that. Is there a patient navigator associated with your MO's office? They are quite helpful.
Patty - I hope you feel better soon.
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So the nurse called and doc wants to see me today at 5 pm to discuss the MRI which was reviewed w 2 radiaologists. I can tell it's bad news. So I just want to know some options for next line of treatment. I've failed Tamoxifen, Arimidex and now looks like I'm failing Ibrance/Faslodex/Lupron/Xgeva. Honestly my gut is telling me that I'm resistant to hormonals and to go with Xeloda or Abraxane as the next line. My onc had mentioned Everolimus/Exemestane last visit, but I haven't heard great things about that one and I'm not too keen on that being my next line of treatment. Anyone? I just want to go in there w some options and ideas, so I don't feel totally hopeless. I also want to explore surgery on these neck/spine mets for pain relief instead of pills all the time.
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Cristina, oh I hope they have a good plan for you. Hugs
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Cristina,
Thinking of you and sending you strength to get through the day. I do hope you can get some relief from the pain. I think it's hard to focus on anything else when the pain is so unrelenting. My orthopedic surgeon was incredibly helpful in giving me options (ironically, he also is the one that found my cancer.)I don't have experience with the other treatments you reference, but am sure you will get some guidance soon.
Rachel
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Christina - When my hormonals failed my mom they went to chemo and she chose Xeloda. Her pain and enlarged nodes were gone by the end of the first cycle and for over 18 months she managed it very well. She only had issues with her feet during one cycle and a week's break resolved that. Other than that she had no stomach upset or any of the other SEs that they'd warned her about. Everyone is different but as far as chemo goes, Xeloda can be quite easy.
If you go to that next, here are the things she did that may have helped avoid SEs:
- Lots of lotion on hands and feet throughout the day and at bedtime
- Soaked feet in cold water when they did start to burn and get red
- Took her pills with some yogurt or wrapped in marshmallow fluff (we'd heard it was a good idea and believe it's the reason the pills didn't bother her mouth or esophagus)
- Drank lots of water
She did those things and got along really well with Xeloda. It got her progression under control very quickly and during her time on it she said she felt better than she'd had in years.
Good luck at your appointment! Hoping it's not bad news at all.
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Cristina, I hope you are wrong about the news, but in case it's not good, know I'm thinking and praying for you. I hope the next treatment does the job it's suppose to do. Have you had a recent biopsy to confirm the ER/PR status? Has it changed by any chance?
Good luck - will be thinking of you today.
Amy
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Cristina,
Hang in there...IF needed, it looks like there are some treatment options for you that have shown positive and long lasting results. Will be thinking of you!
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Thanks guys, onc left a quick message that its "complicated" but not necessarily bad, and she's not changing treatment. She asked me to try again later right before 5 pm. She did say she needed to see the rest of my spine. I went ahead and scheduled the lumbar/thoracic spine for Jan 20 at 8 am.
Whatever the outcome, I want to work on having a healthier diet and get back into my short walks.
Thanks for the info on Xeloda, with those tips, it sounds tolerable.
I will keep you guys posted.
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cjanet - I will be keeping you in prayer for hopeful news.
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Annie, it is a little intimidating discussing cancer and diet with an M.D., so please forgive me if I say anything stupid!
There is a nice overview of some of the dietary protocol at healingcancernaturally.
I haven't been following any healthy eating concepts pretty much since the breast radiation knocked me flat. My energy was just starting to return when we had an explosion of overtime at work, so I'm just now in a place where I can start working on this again.
Here is the Milaandra overview:
Macrobiotics - based on Asian cooking and philosophy, the most famous practioner is Dirk Benedict who went extreme and ate nothing but brown rice until his prostate tumour worked its way out of his body by way of his penis. (owie!) It's vegetarian, based on whole grains, naturally fermented miso, sea vegetables and a variety of seasonal vegetables cooked in a variety of ways, all at each meal. I don't know how anyone can do this when working. People have claimed that it has cured all sorts of chronic diseases. However, its guru, Michio Kushi died of pancreatic cancer (he also had colon cancer earlier) and his first wife died of cervical cancer...he was 88, but it's still not the best endorsement! I tried it for a while when my mother had cancer, and it's really, really tough to do....particularly for something that didn't work on his own family.
Budwig - based on a German physicist's work with fatty acids. The books are translations from German, and there are a few inconsistencies, so they require careful reading. In short, Joanna Budwig blamed bad fats and a lack of good fats on the majority of our problems. .Her recommended oil was flaxseed oil, which she discovered was better absorbed by the body when blended with sulfurated proteins. Her diet is basically vegetarian, although she said you could eat meat as long as it was good quality. Dairy is a big part of her diet, including the quark/flaxseed oil/ground flaxseed mixture she recommended eating twice a day. She said to take no other oils, although she also recommended a flaxseed/coconut oil/garlic/onion spread, and mentions some nut oils in the book. Her successes with terminal patients are anecdotal, although I have seen some scientific study that backs up the flaxseed and sulfurated protein concept. This one is doable, although, again, difficult for anyone working. Things like fresh juice with freshly ground flaxseed in the middle of the afternoon...waiting a certain period of time between drinking a hot morning tea and eating the mixture...just very tough to do when you're on a schedule. However, I incorporate the flaxseed/quark mixture. She also recommended starting the day with a fermented beverage...her recommendation was saurkraut juice, but I think fermented buttermilk was another possibility. Fresh pineapple juice comes in later in the day. So the enzymes are another interesting aspect of this one. Johanna Budwig died in her mid 90's from a complication following a fall.
Gerson (which is sometimes combined Gerson-Budwig or Gerson-Cellect-Budwig) I think this is the raw foods and juicing diet. I tried juicing, but again, very time consuming. Plus I was adding in apples and carrots, etc. to make them palatable, which I began to think was a bit sugar heavy. Others may have first-hand knowledge of this one.
Ketogenic - on the premise that cancer loves sugar (the way PET scans work would seem to back that up), ketogenics are supposed to literally starve cancer cells. The concept is that a healthy cell can exist quite happily on ketones, but a cancer cell doesn't have the flexibility to do that. The ketogenic diet goes further than Atkins (who also died after hitting his head when he slipped on some ice...weird coincidence!), with more specific dietary macros and healthier choices. This will be my diet of choice. Grass-fed organic meats and dairy, eggs, the flaxseed-quark mixture, healthy fats, low carb veggies.
There are likely more out there, but these are the main ones I think.
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Christina, sending you strength and hugs!
Annie, such a beautiful gift. I would also be in tears!
Annimal- denial sounds great!
Got to run, so much to do! I was down for a while after the zometa on Thursday. Love to everyone!!
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Cristina, will hold you in my thoughts as you get your results! Hope you get some pain relief soon
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Oh Christina I'm feeling for you, I hate to bring it up but ask your doc about medical marajuana it helps with pain.
Nice Milaandra I have been looking at these options as well.
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Cristina, I'm so glad your onc left you a message that should relieve your worst fears. I will also be keeping you in my thoughts and prayers until you know the full situation, but it sounds like he's already given you some positive news.
The discussion about food and nutrition made me want to share something the Harvard School of Public Health just put out. If you're not eating particularly healthy now, this could be a great starting point. http://www.hsph.harvard.edu/nutritionsource/health... I am also a firm believer in baby steps because one of the first books to get me moving in the right direction after years of crazy fad diets, etc., was a book by Dr. Andrew Weil entitled, 8 Weeks To Optimum Health. Any of his books are good, but that one helps you make small changes over a few weeks that can make a big impact on your health. Here's a link to another food chart, this one by Andrew Weil. http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-...
Personally, I eat mostly fruits and veggies... as organic as I can (which means if something is 3x the cost of non-organic, I may reluctantly buy the non-organic option), lots of brown rice and other wholesome grains, some beans, especially lentils, a little fish, less chicken (this after going vegan for a year or so and deciding I needed to have a little fish, etc.), very little dairy -- European cheeses if I do have cheese (preferably sheeps milk or goats milk - something I had to work at liking, preferred) ... olive oil for cooking... organic butter (very little)... an occasional free range egg... nuts... very little packaged food -- maybe an occasional natural soup or something like sweet potato chips. I focus as much as possible on the veggies and fruits that have known cancer-fighting benefits -- raspberries, blueberries, asparagus, mushrooms, onions, cruciferous veggies, avocados, watercress, sprouts, arugula, beets, pomegranate seeds, etc. I try new "exotic" fruits when I come across them, as well as use many herbs and spices, because I'm convinced they contain micro nutrients that benefit us, and matcha green tea with almond milk. I sweeten only with honey from Germany (b'cuz I know it's pure), and natural maple syrup. Oh, and I don't eat wheat. Fortunately, I live in Southern California, where fruits and veggies -- even organic ones -- are reasonably priced compared to more northerly climates. If you don't already follow him, the Medical Medium, Anthony William, puts out great information on foods and their nutritional benefits. http://www.medicalmedium.com/
Annie and Ellen, love the quilts and the stories! Iwrite, love the new avatar! So nice to put a face with a screen i.d.
I was @ UCLA yesterday. Saw my wonderful onc, then the specialty dentist who cleared me (finally) to start Xgeva. It's been 6 mos. since I've had scans, so that's next on my medical "to do" list this month. Yuck. You all know how I feel about those.
Still reeling today from the news of Holley Kitchen's passing, as I'm sure everyone here is.
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I believe that so many anti-cancer diets recommend going meatless for two reasons. One, it is said that cancer cells don't thrive in an alkaline state, and a vegetarian diet is supposed to help achieve that. Two, the standard North American meat animal is pumped full of growth hormones, antibiotics and fed unnatural GMO food. Dairy, organic or not, is supposed to be full of hormones because of the state of the lactating cow. Soy is one of those questionable items. Some people say it's fine, others say it reacts in the body like a hormone unless it is fermented.
I think that the biggest benefit of any of these is likely the reduction of processed foods, reduction in simple sugars, reduction of bad fats and increase in vegetables. Those changes alone have got to make a difference to our overalll health! Plus, there is the mind/body connection as well. It's so easy to feel completely powerless and dehumanised in this situation. Taking control of our diet can make us feel we are doing something positive and constructive, and we all know that a good frame of mind can affect our health in wonderful ways.
Here are the supplements I've been taking and/or want to incorporate:
CoQ10 - there was a clinical study with breast cancer patients taking 400 mg a day and the results were really promising. I was taking 300 mg a day and I'm working myself back up to that. Added bonuses: it's cheap and it helps increase energy
Indole-3-carbinol - like lots of cruciferous vegetables but without the gas! LOL!
Curcumin - lots of information out there about this one. I haven't incorporated it yet, but will, if for no other reason than to help with inflammation and joint pain
Lypospheric vitamin C - intravenous vitamin C is one of the big natural supports because it allows mega-dosing while bypassing the digestive system. Lypospheric vitamin C is said to be the next best thing and again allow bigger doses without dealing with inconvenient bowel intolerance
Modified Citrus Pectin - I took this 3 times a day for at least six months after diagnosis. It's not cheap. It is supposed to prevent cancer cells from settling in to new areas, and naturopaths recommend it particularly before/during/after biopsy and surgery. This is based on preventing "seeding" (which doctors don't tend to believe in, so it may be a big waste of money, but again, I'd rather err on the side of caution)
D3 - turns out I don't need it, despite the short days of Scotland. When I finally convinced someone to check my D levels, they were fine, so I don't take any vitamin D, other than what is in my calcium supplements.
Dandelion leaf tea, dandelion root tea, green tea - the coffee at my work sucks anyway and both green tea and dandelion are supposed to have great health benefits
Oh, and I add a couple of brazil nuts in my flaxseed/quark for the selenium
That's it for me. We've heard from the cannabis crowd. Anyone take anything else?
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Christine, I am so happy that they are keeping you on the protocol!! I can't imagine what you have been through will all this waiting. I like to think that no news is good news.. Easier said then done though.. It certainly wasn't black and white and two opinions with a let's stay on track sounds so good! Ibrance works slow... I hope you get your pain under control soon. Maybe now with the results of the scans you can access yourself which areas hurt and if it is healing mets or angry mets.
As for diet... I am doing vegan and I have done quite well and learned a lot since I started (end of October) I do every now and then have a piece of fresh caught fish or chicken that is free range etc but that is only when I absolutely have too. I cook up all my veggies ahead of time (broccoli, kale, spinach, peppers, zucchini, mushrooms, rappani, and will add in swiss chard etc when I can find organic. I get as much as I can organic. My fruits are apples and pears as right now all the other fruits are crappy here. I also cook up all my beans ahead of time... they are all organic and I soak them. I am a big big fan of mung beans, navy beans, black beans, different lentils and I tired a new bean today that I never heard of. I also have pasta that is made of beans, you can find a great Asian Black bean pasta that I love and I add all my veggies to it. I also do lots of Kale salads with beans in them and I just learned how to make Cashew cream and Sunflower butter which is very easy. I get sprouted bread and have a cereal that is vegan with Almond milk. It's important to get your fats so I eat avocado and use coconut oil for my butter on my bread. The rest of fat I use is all Cold Pressed Olive oil. I even lost a few pounds...
I don't miss any of the sugar at all. I just vision that sugar feeding my mets and that solves that. I do have some wine but I am trying not to do that. So those of you that can't give up the sugar, I can't give up the wine so I know how hard it is.
I have a list with everyone's name.. I pray for each of you ... Love to all
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Lost my post.....darn!
Cristina - sending good thoughts
Hindsfeet - welcome back and so happy at your good news of successful treatment!
Annimal - Sounds like a reasonable thing to do. My therapist said it's only denial if you refuse follow-up care; living with cancer and carrying on as usual is not denial. So I don't think you're in denial...just being smart and sensible.
Love the nutritional advice. I'm on lunch break, so back to work.
Hugs to all,
Terre
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Hello all!
Took a few days away again, just to regain myself. But thoughts of how everyone is doing drags me back, so I will have to get caught up, but I did see that Cristina may be getting a new treatment. Fingers crossed that this one will do the trick for you. And Patty, I do hope you're feeling better.
I had my bone scan last week & was very worried about it, but I got preliminary results today & the interpretation was "Stable or improving findings" This is good news, but I'm still concerned about the headaches with the weird smoke smell. But I won't know anything for another 10 days or so til I see my MO.
As for diet, I eat high fat, low carb. I was close to vegetarian & was so anemic that I could hardly get out of bed some days, so my first MO suggested that I eat a hamburger or a steak, so I tried that & along with vegetables, & good fat, I lost 35 lbs without even trying. So our diet consists of high quality meat, lots of veg, some fruit & good fats. We never eat any processed or fast foods. Sugar is a very rare treat, we can barely eat anything sweet anymore, it's just too sweet & we don't eat bread, rice or pasta.
In the meantime, kind thoughts to everyone here. Cheers, Dee
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Welcome back Dee. It's nice to see you here again and congratulations on the scan. That is great news!
Amy
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Deanna, It's good to hear you have the clear to start Xgeva. I know this has been a long road for you.
Dee, Stable or improving are just the words we want to hear. Good to 'see' you.
Carol, I will check out the Asian black bean pasta. I've been trying new recipes. Lots of good nutrition info from many of you....thanks.
Love the quilts, and Ellen I get the middle school humor thing. I taught middle and high school for many years. Love the dead chicken. I had a purple cement pig in my room. The kids loved it. They named her Selma Mae and she is now outside on my deck.
Amy and Annie ( MN Annie) I think MN and WI people get a free trip to the Bahamas to avoid the -15 tonight don't you? Our wind chill is -35 right now.
Good night to all.
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