Bone Mets Thread
Comments
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My post on the Metastatic Breast Cancer study was deleted until permission and review are granted. I will repost if approved.
Kendrasue, I agree with Leapfrog. When do you see your oncologist?
Any probiotics to recommend? My GI tract is not happy!
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Quick question for all of you lovely folks - is anyone with bone mets NOT in a bone strengther? I am one Faslodex, Ibrance and Herceptin as of my single rib met discovery in feb (also had rads to bone) but onc has not yet recommended a strengther - is that unusual from your experience?
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Lauren, I have an Xgeva shot every 6 weeks but didn’t begin that med until I completed my initial chemo, surgery and radiation, maybe it’s in you future, just not yet.
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Lindalou: I cannot suggest any probiotics, because the supplements I buy here in Germany will probably not be available in the US. Generally, I tried to find a mix of several strains with a high amount of live bacteria in a acid-resistant capsule. Maybe someone else can step in with US brand names.
I know that probiotics will not miraculously make all gut issues disappear. There are a lot of SEs or other problems that need different treatment such as medication or special diets. But maybe it is one piece of the puzzle or may help for certain conditions as it did for my husband. If only one further person will benefit from it, it was worth mentioning.
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Hi Lauren,
Bone strengtheners, like everything else, have side effects so I suspect that your oncologist is holding off prescribing this until you need it. With only a single rib met, bone breakage is not an issue. My MBC was diagnosed in December 2016 with a right pleural effusion and bone mets but my MO did not immediately put me on a bone strengthener. However, by early October there was significant progression in the bones with mets showing up in virtually all of my spine and hips. At that point he felt it was necessary so I am now on a drug called Pamidronate to reduce the chance of breakage.
I wouldn't worry for now... you have enough to deal with!
Pat
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Thank you alot NettaGer for your support and i have to ask our oncologist about this symptoms to be clear to us
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Than you zarovka alot
My mother still has bad symptoms and it may be from radiation dear.
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hello Lindalou,
The best probiotic is VSL3. They make 3 types and the prices range from $60 to $350 for the most potent one, for which you will need to get a prescription. They need to be refrigerated.
I have also used bifidum and lactobacillus probiotics made by Natren, that were doctor recommended and can be easily found in any Whole Food stores. These need to be refrigerated as well
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Hi Lindalou, I make my own yogurt. If you don't have time buy plain yogurt that has live bacterium bulgaricum. If someone is interested I'll post how to make
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I’m interested! Please post the instructions....thank you Blueshine
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Miaomix, it is easy, but you have to follow the instructions. Choose a plain yogurt and on the back should say it contains a live bacterium bulgaricum.
You can use 1 percent, 2 percent or whole milk. Boil the milk until raising. Let it cool down to a body temperature /, or 50-52 degrees./ for Every 1 liter I put 2 tbs from the yogurt, mix it carefully, then pour out in glass jars. Wrap them in plastic bag and cover with a blanket . Let them stay 4, 5 hours,then move them in the refrigerator for a few hours. Usually I do a gallon milk and the yogurt last a long time in the refrigerator, at least 2 weeks, only becomes more sour,but it's ok.
Good luck!
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sounds good Blueshine, I will try making some homemade yogurt tomorrow. Thanks!
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Hi Lauren, I was diagnosed with a single rib met in Sept 2017. Had radiation, changed from Arimidex to Tamoxifen and I get Denosusab sp? shots monthly to strengthen my bones. My MO said she believes there are other mets lurking just not big enough to show on scans yet. I would follow it up with your MO.
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Thanks for the probiotic tips and recipe.
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Thanks to all who responded about a bone strengther. I asked my MOand he said there is no good reason to go there yet and add new side effects. Julie - did the radiation resolve your rib met?
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Well, I finally achieved an immediate appointment with my oncologist—for Friday, March 23, to follow up on March 19th’s tests. For some reason, this time there wasn’t a follow-up appointment in place for me. It was such a draining struggle, to force nurses to call doctors to get some action. I am now ensconced in the hospital system, something I never wanted any part of. But, the glamorous Cancer Center came to town and hired every single private practice oncologist in the area, including mine. My husband picked up the written text and digital image CD of my results yesterday. Even worse, as far as my limited knowledge can interpret. Who knows, maybe it's not what it looks like. But it sure does look like progression to me. I fear that I’m not going to be able to handle this by myself over the next two days, and so I’ve come back here in the hopes you might have some kind words of strength and advice for me. Thank you!
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Kendrasue - I hear you loud and clear. regarding scheduling doctors, dealing with cancer centers/machines and facing a nasty scan report. I have been dealing with all three. There are solutions, but it takes time. Hugs.
>Z<
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Kendrasue, I am sorry that you are going through so much right now. I know that the thought of progression is frightening, but if it is progression, there are many treatments available. You have been on only one line of treatment all this time, right? It might be hard for you to think about it right now, but 3 years on one medication is good. Now, what does the radiology report say? Does it actually say there is progression? Is it still bone-only? We are all here to help you through whatever is happening. Many of us have been where you are now. We understand how you feel.
Hugs and prayers, Lynne
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Kendrasue, we are the only one, that know how you feel. but from this cancer journey i learned one important thing - Never cross the bridge before you reach it. DO something you love to distract yourself from worry and wait. i know it is hard.
Prayers , hugs, love , Elena
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Kendrasue it may not be progression they said mine was going to be and it wasn't
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Lauren, it didn't resolve the met, but certainly helped with the pain and I've been stable so far. Have another bone scan next month.
Julie
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Good morning! Thank you for being there. Please stay with me.
Leapfrog, thank you. I will listen to you and follow your wise advice. My appointment with my oncologist is on Friday—I'll try to stay calmer than I've been, now that I know I have this appointment. A big hug back, and feeling buoyed by your prayers and thoughts.
Lindalou, thank you for asking about my oncologist's appt. Thank goodness I now have one (Friday, at 1 pm), and I'll report back afterwards.
Zarovka, thank you for sharing with me. And thank you for the comforting hugs. Hugs to you, too.
Dear 50sgirl, I've missed that beautiful smile! Yes, I've become frightened, but am going to try to relax. You're right, I've been on Arimidex for 3 years. And, after 2 years on Xgeva monthly, I now take the injection every 3 months. The report says a lot, but primarily all three test reports only mention bone, I think. There are phrases such as "slight increase in density and activity" and "mild progression" in ribs, femur, etc. and some other things. Your hugs and prayers mean everything to me, Lynne.
Blueshine, thank you for your sage advice, and I'm going to follow it. I'm going to renew my interest in observing every smallest beauty around me, starting this morning. I haven't been able to do that lately, but after reading your words, I feel that I want to do that observing that I love so much. It has always informed my writing, which I've stopped doing for a long time now. I lost my muse. So—about 15 minutes ago, I watched 20 turkeys slowly traveling across the meadow that borders my home. I forgot how I loved watching them, I noted the flock was bigger than in the past, difficult for them to find food through the snow, making sure they didn't wander too close to the house. It was enjoyable! And, distracting. Thank you for your good idea, Elena, and your prayers, hugs, and love.
Delvzy, thank you for sending me your ray of hope, and sharing your good news, as well.
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Hey everybody, I wanted to share some news. I've been on Ibrance + Faslodex since October. I dislike those monthly shots, but I was previously on Femara and it made my bones hurt worse than my mets. My doc said, “Your bones need a rest."
So, my 2nd PET scan last week while on Ibrance and Faslodex showed stability and regression. Much lower SUVs in my bones. I'm sharing because previously I had been on Faslodex and had significant progression. I wasn't hopeful that taking it again, this time with Ibrance, would help, but it has. So if any of you on Ibrance are struggling with AI side effects, ask about Faslodex.
In addition, I've been able to cut my daily pain meds in half now that I'm off letrozole. I only take 5 mg methadone in morning. The letrozole was contributing to my pain. Plus, exercise used to make me hurt more, while on letrozole. On Ibrance, I feel better after a 3-mile walk.
It's not all roses; my skin is wrecked; like a painful sunburn, with peeling, from Ibrance. It's a very rare side effect. I’m in my 7th year with mets, so I feel fortunate
Wishing everyone a pain-free day
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TarheelMichelle, WOOHOO! I am glad to hear your good news. Thank you for posting the information about Faslodex and Ibrance, it will be useful for so many people here. I hope you continue to experience positive results for a long time. It is always encouraging to hear from people who have had MBC for as long as you. WOOHOO!
Hugs and prayers from, Lynne
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Kendrasue - I'm so sorry you are facing this scary prospect of progression. I am still pretty new to MBC (1 month into dx) so I've not yet been in your shoes, but I know I will at some point. I do want to send you all my best wishes, positive thoughts, prayers and many hugs as you go into this appt tomorrow. We are all right there with you and will be here to support the outcome! Let's hope that your results show stability!
TarheelMichelle - i am celebrating right with you and so pleased to read about your great scan results. I hope that you are able to find some solutions to your skin issues though! Yay for you!
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Kendrasue, Just one more day before your appointment. I think you will feel a bit better once you hear an explanation of the results and find out if you will be changing treatment plans. In the meantime, we are still here for you. My DH and I are in Florida for the month of March. We have missed all those nor'easters that have hit this month. Maybe these pictures of the beach and botanical gardens will help you think of the spring weather that is on its way.
Hugs and prayers from, Lynne
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Tarheel Michelle - Woohoo!. How long did it take to see a response? How long have you been back on faslodex?
>Z<
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If my oncologist prescripe zometa for 6 months and 10 radiation sessions for my mother pelvis and gave her aromasin instead of armidex ( is that treatment is good for her case as i dont understand why he change her from armidex to aromasin and they are the same?
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It turns out the skin bumps were additional, but still, breast cancer. Chemo #8 coming up.....crap....I am stable with no progression, but no real shrinkage either. It happens, I'm told. Hopefully, next scans will show shrinkage....these chemos are getting old & I get discouraged. Trying CBD oil for pain relief, as some of the gals in my cancer YMCA group said it took their pain away, but not mine yet....or maybe it's because I couldn't afford the stronger mg version, I got 3.3 mg, but even that was $60. The stronger one is $200. I'll try the dropper (1 dropper full) for a month & see what happens. Thought it might be better than ibuprophen! Still cheerful & upbeat and handling chemo pretty well.
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Marlene, while arimidex and aromasin are both aromatase inhibitors, arimidex (anastrozole) is a non-steroidal one and aromasin (exemestane) is a steroidal one. Some people who have developed resistance to one class can still respond to the other class - this is probably what your mom's doctor is trying to see.
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