Bone Mets Thread
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Hi Dee - Could you get in to see your on earlier? Sorry to hear you're in such discomfort. - Karen
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Dee, So sorry to hear you are feeling so poorly. Wish the doc you saw today had an answer for you, was this your pp? A week is a long time when you are miserable. Any other doc you could see in the meantime? Don't know anything about gastro issues, but feel bad for you.PattyP, Good thing you are over being ill so you can take care of your guys! Yucky. Hope everyone is back to normal soon.
Carla, Try not to get too bummed over your treatment change. It seems like a good thing if your scan was stable and you are going from chemo to Faslodex. At least that seems like an easier treatment. I'm not sure cancer markers are always so predictive of what's going on, so don't let them get you down. Seems like lots of ladies here on the forum are stable on Faslodex.
AnnieO, You are almost done with your rads, yeah!! Hope you get some nice restful down time this weekend.
Romansma, Thinking of you and hoping you get excellent results and minimal se's as you start your new tx.
KIwiCMom, I think you're funny too! Always enjoy your posts. Hope that wind died down and you are enjoying some nice spring weather.
Sugarplum, No, not everybody does chemo. I was dx'd with bone mets from the start and have never had chemo. Yes, there are a lot of different treatments for the same dx! My mo is of the "save the big guns for later" school of thought, but some do get chemo after being dx'd with mets.
Hi to everyone else. Hope you are finding a little something good in every day.
Jo
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Karen & Jo, Unfortunately I can't get into see my onco any earlier. I have to travel 7 hours round trip to Victoria to see her & I have a CT scan, bone scan & tumor markers in Nanaimo on Monday & Wednesday. Saw both my pharmacist & GP today & both of them think it may be a virus, but it's strange that it's not clearing up. As for the back pain, I'm hoping it's good pain, like a tumor flare. Thanks for the support, I really needed it today. Dee
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hi all
Dee - ugh two weeks sounds like a long time. Wow you have a round trip of 7 hours to see your mo ? Bless your heart. That can't be comfortable with back pain and tummy issues. I certainly don't have an answer. Just wanted to encourage you. Being so sick is depressing for sure.
Freebird - from chemo to falsodex sounds good. Surprised they changed based on the small change in tumor markers and scan show stable. I guess all mos treat patients different. My mo says tumor markers are just a helpful tool. He said we won't change tx unless scans shows progression. Even so, it sounds like a good change for you.
Romansma - how are you feeling today : physically and mentally ? Are you ready to get started in your new tx ? I bet those dang cancer cells are shaking in fear ! Hoping those cortisone shots are still helping.
Dlb- so I am about halfway thru Patrick Quillin's book, beating cancer with nutrition. I love it.
Hoping everyone is having a pain free, happy day.
I still got both ds's home sick from school. I hate that they are sick but I love being able to take care of them while they are sick. There has been plenty of times I wouldn't have been able to. Funny what we can be grateful for now.
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Hi Patty, I hope your sons are feeling better soon. I have Patrick Quillin's book too. I also saw him in an interview done by Ty Bollinger and Patrick clearly states that nutrition will help but will not cure cancer (unfortunately). I was on a mission when I first got diagnosed to find a way out of this mess and I tried the nutrition thing but when my tumor markers started rising I figured it wasn't helping. It can't hurt to eat healthy though.I have been hesitant posting this but I will feel worse if I don't. I have been taking Protocel 23 since 8/17. First, I must say that my tumor markers have never been very high, they started out at 70 when I was dx last Oct. After going on femara they immediately started going down until they reached 29 in April then they started climbing 2-8 points each month until they reached 45 in August. My July scan showed increases in SUV's and a new met, MO wanted to stay the course and I did too, so that is what happened. Of course, I was getting worried about switching meds so in August I began taking Protocel 23 and 17 days later my tumor markers were drawn and they were 33 and they have been that way ever since, they actually dropped another point this past month to 32. My Oct scan which was 1.5 months after I started on Protocel showed 3 SUV's to have dropped and one went up slightly, the report states essentially unchanged FDG avid osseous metastases. I get scanned again In Jan and I will post the results and I am so praying that I will have good news to report.
I have no idea if this is a fluke but it seems too coincidental, I must tell you that I am still taking femara and I get Zoladex and Zometa every 4 weeks. I just can't keep this from the rest of you any longer, lately I have seen too many posts about meds no longer working and women loosing hope. I am not telling you what to do or promising astonishing results, I am only telling you that maybe this stuff is actually helping me??? I pray that it is. (Maybe placebo effect???)
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Musiclover - that is certainly encouraging! I hope you continue to have good news in January.
Linda
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ML, what exactly is in Protocel23? I've never heard of it .. looked it up, but didn't see the ingredients listed. Why does it suggest not using it w/a vegan diet?
I wonder the same thing about eliminating animal product from my diet -- are my so-far good results really due in part to that, or is it some sort of placebo effect because I so strongly believe it's working, at least for now.
Patty, you are so right about bc, and especially a Stage IV dx, making us grateful for so many little, everyday things!
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Deanna, I looked it up too and this is all I could find.
http://outsmartyourcancer.com/what-is-protocel/ingredients/Linda
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I've been on a vegan diet for about 6 months now. Not helping with a pretty significant progression. Interested in learning more about what this Protocel is. I've never heard of it.
Xeloda showed up today. Gave me a little breakdown. Soooooo don't want to take the poison
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Music Lover, that sounds like great news! But I'm also curious what Protocel 23 is?
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Also, sugarplum, a lot depends on your hormone receptor status. I am Triple Negative, so that rules out Tamox and all the AI's, which many ladies might start with before chemo. I'm still reading up, but so far it seems I can't take Tamox, Faslodex, Femara, Arimdex, Aromasin or Afinitor as they are all for ER+, which I am not.
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Patty, the second MO is closer and definitely more convenient. They don't have the cyberknife thing, but they do have the integrative health center; and I would love to add acupuncture and massage if they think it will help with my treatment. I also want some Zero Balancing, but that is still not mainstream. I've located a practitioner in the general vicinity of the hospital and cancer clinic. I think I went to school with the practitioner too. LOL. Also, I'm glad you are feeling better. Tell your family to keep their germs to themselves. Sorry. That's mean. I go see the shrink tomorrow so that's my excuse: that I haven't seen him in a month. I hope they get well soon and do not keep passing it around.
Romansma, good luck with your chemo. Perhaps you have already started it. I'm a page behind. I hope it goes smoothly for you -- but not for the cancer cells.
Freebird, try to trust your treatment team. However, is there someone you could call to find out what they are thinking, how they are reasoning, what made them come to this decision, and what it really means? My new MO has a nurse and social worker as part of the team. I can call either of them to get answers and help.
Dee, I can't help with any information. I'm sorry you are feeling so ill. I want to lose weight, but none of us want to do it they way you are doing it.
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(I was writing a response and then my computer goes and reboots.)
I was hoping to find more positive stories about Protocel but to be honest I only found a few, so I was reluctant to post anything but so far I think I am getting positive results with it. It is a liquid that you need to take @ every 5 hours, you drop @ 1/4-1/2 tsp of it in @ 2oz of distilled water. It sounds too simple to work but I thought I should give it a shot. It costs @ $100 a month and since I am on disability I figured what the heck (some people spend more on their Starbucks). If I ever feel that it is not helping I'll just stop doing it, I do wonder if it will play out like our meds and eventually stop working but I am praying that does not happen but I will stay on it forever if I continue to get good results. It is labeled as a dietary supplement.
Here is a website of woman who has posted on these boards and appears to be honestly trying to help people, she goes through her whole experience using it. http://beatingcancerwithoutbreakingasweat.com/ She is also ER+PR+Her2- like myself, she started off using Protocel 23 and then started using Protocel 50 (I think?). I order the Protocel 23 from vitamin depot, you can call and speak to a Dr. Kim Cassidy (a Naturopathic Doctor). I would inquire if it would be helpful for TN BC, I do hope so and she will tell you which is best for you 23 or 50.
(I am truly paralyzed over my diagnosis, I just can't come to terms with the idea of not doing all the things that I thought I would do in life. I looked high and low for something to help me. I hope this it and if it works for any of you too I would be so happy.)
Deanna, I am not certain about the reason for them suggesting a non-vegan diet but they do say to eat like your grandparents did? Oh, and NO SUGAR. If what you are doing is working well keep doing it, that diet just did not do the trick for me and I dropped to 112lbs at 5'6", I am up to 116lbs which isn't great but it's a little better.
Linda, Thank you. I'm keeping my fingers crossed and I will post my results on here as soon as I get them, the 1st week in January.
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musiclover,
Protocel is known by several other names as referenced in this link:
http://www.cancer.gov/cancertopics/pdq/cam/cancell...
And from Dr. Andrew Weil, someone who is generally open to alternative ideas:
http://www.drweil.com/drw/u/QAA400820/Protocel-A-B...
I am familiar with the woman who used to post on bco who says she is doing well on Protocel and had some email contact with her not long ago. I am happy she is doing well and happy for you if this is making you feel better. Me ? Too much of a skeptic for something without science and credible research behind it.
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Hello all.....I don't post much, but read every night and I think you are all a great bunch of ladies. I had bone mets to lumbar area in May 2014, 10 yrs after original DX. Just had robotic assisted ovary (x2) removal with finding of breast mets to ovaries. Anybody have ER+/PR+ Her2 neg breast cancer with breast mets to the ovaries? Bone mets are much better after radiation and aromatase inhibitor. Awaiting genetic testing not available 10 yrs ago.
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Sorry I didn't have a chance to read all the posts I missed today, but I wanted to post that I finally figured out that I was overdosing on magnesium which is what was making me so sick. My onco has me on 1000 mg of calcium daily & the last bottle I bought has magnesium with the calcium. Most folks are low on it, but not me! I was reading up on all the meds & supplements that I take & one stood out with every single one of my symptoms, when we read "High magnesium foods include dark leafy greens, nuts, seeds, fish, beans, whole grains, avocados, yogurt, bananas, dried fruit, dark chocolate"
I was the most ill on the nights that I had kale or swiss chard & salmon, then I have a small piece of dark chocolate every night & walnuts & banana on my yogurt every morning & nuts as a snack if I'm hungry during the day. So I haven't had any supplemental magnesium today & tonight I feel much better than I have for weeks.
I am still going to take it easy for a few days, but I wanted to post this in case anyone else has this issue. Our onco's want us taking these supplements but don't warn us about things like this. Take care everyone, Dee
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Well done Dee! Or shall I say Sherlock? I'm so glad you're feeling better, and thanks for sharing your knowledge.
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Caryn, I read all of the negatives and the positives about Protocel, I figured it can't hurt to try it and maybe it is actually helping. I can't be certain that my positive results aren't just a fluke. I feel that different things work for different people for different reasons. I am trying to stay as positive about it as possible. I am also aware of a woman who wrote "The Breast Stays Put", she was using Protocel and it seemed to work for her but then she did die of breast cancer. Some say she stopped using it too soon. There are a lot of mixed stories out there about it.
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Great news Dee! Awesome detective work too!!!
Karen0 -
hello everybody
MusicLover - so are you only taking a supplement called protocel 23 now ? Nothing from mo? Whatever it is I am glad markers are down. Praying for good scans for you in January. I wished I had seen the interview with Patrick. Maybe I can google it. I agree not positive it will kill the cancer and I will live happily ever after because I've tried the health thing many years and still had a recurrence. Also read about too many women trying only healthy foods no other tx who die. I just believe how ever long I have I might as well eat well. I believe if my body is stronger I can fight this dang cancer better and hopefully enjoy life more. It can't hurt right ? I certainly wouldn't stop tx for exchange for a healthier diet
Dlb- glad your results are good and hoping they stay that way.
Dune sleeper - what is zero balancing ? Hoping your shrink appt is good today. I so need to get motivated to find one. Glad you are happy with your mo choice and you csn always change it you are not happy later right ?
Dee gg27 - glad you found the cause of illness and are feeling better
Romansma - yes xelido came in. When are you starting it ? I hear ya about the poison. You can do this ! We are here rooting for you.
So both ds's still sick and I woke up 102.7 temp. Dh loaded us all up and took up to the dr. Plenty of zpacks and antibiotics now. Questioned dr why he gave ds's and I different meds. Of yeah crappy cancer and low immune system got me a $50 antibiotic while the boys zpacks were $10. Ahh cancer...the terrible gift you can't return and it keeps on giving. Grr.
Hope everyone is having a pain free fun day
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Patty, I am so sorry to hear that you are sick too now, I hope you are all well soon. I went to bed with a mild sore throat but took some ibuprofen and it has helped greatly.
Please let me be clear I am definitely still on my tx of femara, zoladex and zometa! That is also why I state that I can't be 100% certain that Protocel is doing anything at all, I just feel that the timing was right on and that I do believe that it may be helping me. Kat Turner was only using Protocel with no tx because Taxol had failed her. I am not that brave to stop my standard tx, I would only do that if se's were so bad. Hopefully I continue to get good results and I will be certain to let you all know either way.
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musiclover ,
As I said, I'm too much of a sceptic, and too cheap, but if you feel good about it that's what counts.
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Aww, Patty... so sorry you're sick, but glad you got a strong med for it. Please take extra good care of yourself right now!
Dee...very interesting about too much magnesium. I'm curious about how much you were getting in your supplement. I also eat a lot of the foods you listed, on top of taking a cal-mag supplement, and often feel some muscle weakness and plenty of confusion -- the latter of which I chalk off to chemo brain and the overwhelming lack of estrogen! But your observation does make me wonder...
ML, I so agree with you about different things working for us. Afterall, it's true with meds, so why wouldn't it be true for foods and alternatives, maybe based on things about our bc that may not even be understood yet?
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Hi all,
I haven't been on for a couple of days. Lots to catch up on.
Donutswife2003 - I have mets in my spine but no progression. Also haven't had my spinal fluid checked. Maybe someone else here has?
GCD - glad your bone mets are better. I haven't had any issues (that I know of) with mets to ovaries, but maybe others have?
Romansma - damn damn double damn. I am so sorry your markers are up. That sucks. Hope they get this sorted out and under control quickly.
Those of you with good news - hooray!
Patti - sorry you're sick. Not fun at all...
Glad I can provide comic relief from time to time! Dune never fails to make me laugh.
Hugs to all,
Terre
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PS..Freebird - Bugger. Hoping for good news for you soon!
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Caryn, I'm cheap and a skeptic too but I felt I needed to try something because the diet changes weren't doing the trick and I didn't want to have any regrets down the road, you know? If I have progression on it I will let everyone know and if things continue to go well I will let you know that also. Fingers are crossed, prayers being said, etc.
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Romansma I hear you about being leary of the Xeloda. I was too, but it worked and kept me stable for 2 years. Not as harsh as the liquid chemo I am on now. Good luck with it.0 -
Hello everyone,
I've had so much to catch up on. MusicLover, I wanted to address the topic of Protocel. This happened a few months back when my sister was having a visit with her therapist, discussing how I had breast cancer that had metastasized to my bones. He proceeded to tell her that his sister who I believe lived in Chicago also had Stage IV breast cancer with metastasis to bones as well as organ involvement. He said she was in complete remission after treatment with Protocel and continues to do well. He wrote it down and gave it to my sister to give to me but I couldn't find where to purchase it and didn't really give it much thought. Now it makes me wonder? Can it be purchased in Canada?
Deanna, how was Las Vegas? I hope you had a wonderful time!
PattyPepper, hope you and your boys are back on the mend real soon, have a restful weekend.
Romansma, have you started the Xeloda? Praying for positive results and no side effects for you.
Dee, glad you figured out what was causing your problem. Hope you continue to feel better.
Well, 2 weeks of radiation done! Yesterday was a nightmare trying to drive to my treatment in a snow storm. Today I was there from 8 this morning til 4:30 this afternoon, totally exhausted. I had my blood work done first, then I had to see my mo and get blood results. Everything looks great and my tumor markers went from 137 to 65. I was so happy, this was a different onco today and I like her much better than my original who has been screwing up alot lately. I show up for my pamidronate infusion and he had me booked for Eribulin which apparently is a chemotherapy. Omg can you imagine if I didn't question it? They gave him a hard time about it, and he deserved it! That's a big mistake to make. He is head of oncology at a Major Cancer Center, he needs to be more careful. I think he's taken on more than he can handle!
Well I'm looking forward to alot of rest this weekend. The radiologist said the radiation has cumulative effects which may last for a couple of weeks.
Hope you all have a great weekend! Hugs, Annie
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Deanna, the supplement says it has 167mg of magnesium per tablet & I was taking 2 per day. I think the most you are supposed to have is 400mg. There are a few charts on the net that give you amounts for foods. In looking, I was up around 600+ a day. Also I seem to be quite susceptible to SE's. There are a number of things that I have had reactions to that are rare.
Patty, hope you & your boys are better soon, trust me being ill sucks!
Annie, glad you've got that behind you, hopefully it will give you some relief.
ML, FB, KCM, Saskie, Caryn & Karen.... and anyone whom I missed, hoping for a good weekend filled with fun! or at least painfree! Best, Dee
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Annie - WOW done 2 weeks! You made it! and TMs down. Congratulations.Musiclover - I just ordered the Protocel from Vitamin Depot - they ship to Canada. I will certainly continue my Femara and Aredia - no way am I stopping that, but I'll give Protocel a try. Why not?
Linda
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