Bone Mets Thread
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Mom - PM me if you like, but definitely consider Cure-ious's comments. No single agent is going to work for Dani right now, but a single immunotherapy agent is unlikely to work for anyone. Needs to be combined with an cancer killer that enhances the immune response, like abemaciclib or radiation at a minimum. Complicated topic and your doctors must guide you, but I would communicate to her docs deep skepticism over any single agent treatment at this point. At a minimum they must agree she has multiple cancers.
>Z<
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MomATT, shortly after seeing your post this a.m., this article on neratinib appeared in my FB feed. I think it sounds very promising...
https://www.sciencedaily.com/releases/2017/10/1710...
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Mom, saying a prayer that you and Dani get some answers tomorrow and a successful treatment. You guys deserve a break.
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MomAtt- Hoping you and Dani get some trustworthy answers tomorrow. Sending hugs..
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Mom I hope you and Dani get a better response from doctors. Gentle hugs and prayers.
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Oh, Mom, it's just too much, all of it. I am still hoping that the next fork in the road for Dani will be a huge 180 degree turn. We all admire you both so much.
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Here we go again....
Completed 5 years of anastroloze and at about year 3 had fosamax added as bone density dropped significantly. Am scheduled to see onc in eary November to discuss continuing ot not.
Recently I have been experiencing lower back pain. In early 2014 had laser back surgery for a slip disc completely unrelated to cancer. Back had felt wonderful, completely pain free until recently. Saw PCP and underwent Xray which indicated sclerotic lesions at site of previous surgery. Scheduled for MRI Monday AM to most likely diagnose bone mets.
I don't understand. Having taken hormonal therapy coupled with a bisphosphonate, how could I end up with bone mets. I'm angry, sad, and scared.
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sherryh16, I am very sorry you find yourself here. We have been where you are now, and asked ourselves the same questions. I can tell you that you will find so much love and support here, the people on this thread will help you deal with all the questions you have, and all the emotions you will be going through. They have all been through the same thing. I will tell you that once you have a firm diagnosis and a plan for treatment in place, you will start to feel a little better. If you have questions or just want to vent, please feel free to do so here.
Hugs and prayers
Claudia
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Sherry, I'm so sorry about what you're going through. Let's just hope and pray that maybe whatever was seen on x-ray -- which is not the normal diagnostic tool for mets -- might be some sort of healing artifact from your earlier injury/surgery, and not actually mets.
Your post made me remember how incredulous I felt when I was dx'd w/early stage bc. After all, I had always taken care of myself -- been athletic, worked out, ate healthy, took supplements, and had yearly mammos. Unfortunately, none of that, nor an anti hormonal med, nor a bisphosphonate is ever 100% insurance that we won't get a bc dx or a recurrence. But I'm still hoping this is just a horrible scare for you.
I'm glad you don't have to wait too long for the MRI. Just know we are here for you, no matter what the outcome. Hugs, and I'll be sending you calming vibes, especially on Monday. Deanna
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Sherry,
I also want you to know that there is a lot of support here but as Deanna notes, there is a chance that it is not mets. My first thought was also healing given the location at the surgical site. I hope the MRI shows only healing and nothing related to B.C.
Unfortunately, for some of us, it seems all the adjuvant treatment ultimately does not protect us from MBC. I was originally diagnosed with Stage IIA. I had a lumpectomy, aggressive chemotherapy and radiation. I was then on Tamoxifen for 5 years and Arimidex for 3 years. Despite this, I now have mets in my lung and bones after almost 16 years from my original diagnosis. I am doing well and have hope that I will continue to do well for some time.
Sending positive thoughts your way.
Pat
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Sherryh, so sorry to hear about your scare. Hoping it's just that. I too had aggressive treatment for stage 3a and was on aromasin when my extensive bone mets were found. It's a very tough situation to deal with. Just know you can deal with it. Best of luck.
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Question for all of you.....In the past 6 months Ibrance didn't work for me and radiation did not relieve any pain for me. I had one treatment of Gemzar and Carbo and now have severe GI issues so that tx is out for me. Has anyone had a tx where diarrhea is not so prevalent? I will cross post on Xeloda as well. Thanks
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The only treatment I've had is H&P with Abraxane, I only had mild D one day/week, which was resolved with a morning Imodium pill.
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momallthetime I was sorry to see your post on Dani she has been through so much in such a short time and deserves a break. What Z suggested sounds like a great way to go. Danis doctors need to step up and actually help you both. Hoping for this in the very near future.
Lindalou I didn't have any problems on Taxol😊
Z I hope things are going well for you in Japan time seems to be flying by eh? How are you feeling?
I've been trying to fill my days with lots of activities. Visited friends in Oregon for a week went to Florida for a business trip thing my husband had and now I'm planning something at Christmas. After I finished chemo I had an okay scan (was still three pages long not a good sign) and my onc put me on letrozole which I hated back in April. I become a total bitch on this stuff. She also wants me on Ibrance but I've been stalling with this one. No eyelashes yet been a month no eyebrows and my hair is comin g back in patches oh the fun that is cancer. I just signed myself up for a regatta in Florence next July breast cancer boats from all over the world are meeting for six days in this city. Happens every five years so I figured now or maybe never lol. I think sometimes am I crazy?
Wish all you lovely ladies a great weekend.
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LindLou. I also was ok on Taxol and also CMF
Wendy. I love that you're making plans so far put!
To all whove had rads:
Did it work?
What were the se s
I'm having terrible issues with my right side some pain and lots of cramping of my hands and feet. Maybe I should rethink waiting for radiation?
Bab
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Rads have always done the trick for me. Had back radiated twice in two areas, and it was always a godsend. No, it doesn't get rid of the pain right away, but after 2-3 wks there's a definite difference. Nevertheless, not everyone responds the same way.
As for Tx and diarrhea, most of them DO cause some gastrointestinal issues. Even Xeloda....altho I never crapped my pants on Xeloda like I've done with Taxol.
My palliative care doc explained that MOST chemos affect the GI tract because the cells grow quickly there, and chemo KILLS those cells, so naturally you're going to have issues. Not fun to think about.
I'm having a dual infusion of Zometa (for my bones) AND Taxol next Wednesday. Not looking forward to that at all. I think I may take a prophylactic dose of Imodium to head it off at the pass.
Take care,
L
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babe, I agree with Lita. Rads have always worked, but relief is not quick. But, it does come.
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Babs, I have had radiation 5 separate times. They all relieved most of my pain except this last time. I'm one of the few whose cancer is radiation resistant ( thus the repeat rads) but a researcher will be analyzing my cells soon.
Lita, I think you are right. They almost all cause some sort of GI issue. I just need to find one that isn't so bad, so I can eat again. Good luck with Taxol and Zometa. Are we having fun yet?
Wendy, you go girl and take all of us with you on the regatta!!
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Yep on the GI stuff. I was badly constipated to the point of worrying about impactions with one of my past lines of treatment-- was it the year and a half I was on Afinitor+Aromasin? Or was that the three years of Xeloda? No no, it's coming back-- Madame X was a GI rollercoaster for me. It's hard to remember what caused what anymore, after seven-plus years on one thing after another.
Taxol can also be a bit of a rollercoaster for me. No warning before it hits, either, so I wear extra-long panty liners every single day, just in case. And let's just say I'm not scared of cheese and bananas anymore.
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Wendy, have you considered switching to Arimidex? After my original diagnosis I was on 5 years of Tamoxifen and then 3 years of AI (at the time, they had just discovered that this path was an effective adjuvant treatment). I started with Femara but, like you, found that it made me into a total nightmare. I couldn’t understand why I was so cranky all the time and very quick to anger. I would fly off the handle at the list little thing. When I finally realized what was going on, I told my oncologist that I wanted to quit. He had me switch to Arimidex/Anastrozole and it was like night and day. (I’m still a bit cranky but I think is a combination of genetics and the total lack of a filter that I now have - don’t really give a damn now 😉 )
Playing the waiting game again. I had a CT on Thursday and so far have not heard back on the results. While I feel great, the last CT showed progression in the bones. MO indicated it could be healing rather than mets but if this one shows more I am not sure we can ignore it.
Wishing you all a great weekend.
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Thanks to everyone for your uplifting comments. Been doing my research and am wondering how does one afford the targeted therapy Ibrance (palbociclib). My health insurance is the absolute worst requiring me to meet annual deductible of $7350 and then pay 30% of prescription costs. My research shows this therapy costs well over $11,000 for a 21-day dosage. Holy Crap! I can't afford this.
What do you pay and how do you do it?
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Hi Folks its been a while since I have posted, but I do read most post. I would like to share a quick update. I read a book called Radical Remission by Kellie Turner back in Aug. It shares many individual stories of healing using 9 common factors that cancer survivors had in common. This book spoke volumes to me and I decided to follow 4 of the top factors: Diet/Exercise/Meditation and spiritual guidance. I am also working with a Natural Doctor to compliment my western medicine regiment.
Its been approximately 80 days since this life style change and I am feeling good. Taking control of what I can do to help improve my health and not just leaving it to others. This Tuesday October 10th I had a full body CT Scan and a Bone Scan.
On Thursday my ONC sent me an e-mail with the results, here is what she said:
Hi Veronica!
Your scan results are in and look good! The CT shows that everything is stable, and the bone scan (which is more sensitive) shows improvement. This is great news.
She also included the test results and findings which stated:FINDINGS:
There are no new areas of abnormal MDP uptake.
Multiple lesions involving the spine, pelvis, right femur, right scapula, rib, sternum, and left clavicle appear slightly decreased in intensity. Prior calvarial, left pelvic, and left lesser trochanter lesions are no longer well visualized.************************END
These are POSITIVE results which I believe are contributed to lifestyle changes and spiritual renewal. These results compelled me to post. I hope you consider reading Radical Remission and implementing changes that might help you as well.
In addition for those of you who are interested in short health/spiritual retreats "Harmony Hill" offers FREE retreats check out https://www.harmonyhill.org/
Take care,
Ronnie
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Sherry,
Patient Access Network (PAN) will help you. My cancer center. (Part of Kansas University Med Center) made the initial contact for me, but you can go directly to them. They were amazing when I was on Ibrance.
The Ibrance web site also has financial help info on it.
I hope you find the help you need!
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Sherry, There is financial assistance available because no one can really afford that $11,000 a month. If your insurance is not Medicare or Medicaid, the Ibrance.com site offers a co-pay assistance card. It looks like it is fairly simple to apply online from that site. If you are on Medicare (and probably Medicaid), you are not eligible for that program, but there are other programs available. Some have annual income limitations, a few do not. Your oncologist's office should be able to help you with the process of finding help. Mine works with a specialty pharmacy to get assistance. Their patients don't have to do any of the legwork. In fact, I didn't even have to ask about it. They told me! I assume that is a common practice for cancer centers since medications are very expensive. If your MO's office doesn't help, there are links to programs on the Ibrance.com site even for Medicare/Medicaid participants. Just follow the directions under the financials tab.
Lynne
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Thank you, Thank you! So appreciate the help. This is a terrible journey to take and having the financial issues on top of it all is just overwhelming! I am not on either medicare nor medicaid, but have private insurance through Obamacare which unfortunately does not cover prescriptions nor even my oncologist (out of network), so I am left cover these costs out of pocket.
On a side note, I have an appointment scheduled for Wednesday morning to undergo nutritional response testing. -- NRT. It hopefully will provide some insight as to what nutrients I may be lacking as well as what toxins I am retaining. Improvements in both couldn't hurt. I strongly believe that we can heal the body through nutrition -- if not completely, hopefully enough to help.
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Ronnie. That's great news and thank you for sharing!!!!
Bab
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Sherry, here's a link to Pfizer's co-pay page. None of us -- other than those on Medicare and in what's referred to as a donut hole -- ever have paid more than $10/month for this med. Just call them for help. https://www.ibrance.com/financial-assistance
And please share with us more on the NRT. I'm very interested.
Ronnie, great news on your scans! YaY!!!! Several of us here are big fans of Radical Remission. When you think about it, if each protocol or therapy or lifestyle change only helps a small amount, when you add them all together, it makes total sense that the impact of doing them all can be huge.
Happy weekend to everyone. And just about midway through Pinktober, thank goodness. I am so happy to see more and more mainstream articles, interviews, blogs, etc. about mbc and the need for research over awareness. We are finally being heard, which should give us all increased hope!
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Thank you dlb823. Will keep you posted.
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Wendy - I am glad you are doing the regatta and planning ahead. Your head is always in the right place.. I am feeling every manner of emotion on this amazing and difficult trip. Thank you for asking.
>Z<
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Wendy- awesome idea to go to the regatta in Florence. It is a way to recapture your life. I am heading for Paris tomorrow, will be a more laid back trip than usual- an attempt to live my life and beat the scary demons away.
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