Bone Mets Thread
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Hopeful: No, it was not palpable in the normal position standing up straight with the hands resting on the head. I have quite big boobs (being rather overweight) and it is positioned in the inner lower quadrant just below the nipple, so if I stand up straight, it is completely covered/surrounded by breast mass. Additionally, it follows the course of a duct. The only position to have it palpable is to lay on the back with the upper body tilted slightly to the side (a rather strange position in which nobody would perform palpation). The same applies to ultrasound diagnosis. Three months befor dx, I had my annual check-up at the gyn, who did not find it!
With respect to regimen, I do not think that this is the clue to my good response to I/F. I have both meds in the morning together with breakfast and a multivitamin/multimineral tablet and a prebiotics capsule. When I started the medication, I feared that I forget to take it and my breakfast is very reliably at the same time. Plus I thought (little did I know) that maybe the SEs are stronger the closer after taking the meds, so I thought to have the hot flashes rather during daytime than at night preventing me from sleeping ... does not help ;-) . Additionally, dinner is not the biggest meal in Germany, we have our warm meal for lunch. And I did not know about food effect of Ibrance when I started taking it.
With respect to nutrition, I am also not a role model. I try to eat 5 portions of fruit and vegetables per day, but that is about it. I have never been a meat lover and only have meat 2-3 times per week. But I do have a binge eating disorder, that is why I eat a lot of unhealthy stuff as well (cannot help it, but I am having therapy on this).
I believe that the clue to my good response is that I am one of the persons where Ibrance enables the immune system to see the tumor again (as per the Nature publication from May 2017). I feel a lot of itching/slight pain at the position of my primary tumor and in my axillary nodes that comes and goes, which I think is my immune response. However, I am still having trouble with increasing tumor markers, so there might be some cancer activity elsewhere, which cannot be detected by scans. A good response of the primary tumor might not mean that everything is fine elsewhere.
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Welcome to all the newcomers, this thread has a stellar lineup of knowledgeable, sharing women. Hopeful, can't add anything more to the conversation except to stress how important a good relationship is with your MO. Bring him/her all your questions and make an informed decision together.
Amarantha, I hope your husband is comfortable and recovering nicely. Now, what's this about a breast biopsy?
Amen to all our support teams. I'm having trouble shifting from caregiver to care-receiver, but treatment is going well so I can still do most things and slowly relinquish chores. DH does all the shopping now, for which I'm eternally grateful!
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Hopefu, there are recommendations to take Ibrance with a meal that hasn’t healthy fats. Something about maximizing absorption or something (can someone correct me on this). Some folks find taking ibrance at night correlates to problems with sleep. Have you found our Ibrance thread? Lots of great experience there too.0
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Hopeful - I have a single bone met in the rib and we treated it with radiation (surgery in that location would likely have yielded chronic pain so Onc preferred radiation in my case). I had no pain prior and we did 16 radiation treatments. Note hat I started Ibrance the same day so you shouldn’t have to stop Ibrance for rads. I would talk to your doctor about radiation to reduce the tumor burden.
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KendraSue...I'll weigh in as well since you're feeling so frightened. I'm coming up to my 14th cycle of Ibrance and I can tell you it is absolutely NOT chemotherapy, nor is it anything like it. It comes in tablets (mine are in a bottle, I'm on a trial in Australia) that you take, one a day for 21 days and then you have a break to allow your bone marrow to recover. Yes, there are some side effects but they're relatively easy to tolerate. Fatigue is the main one; the rest are minor and most women hardly notice them. I tend to have quite a drop in my neutrophils and I need a two week break instead of one week. Most of the time I feel good except for about 2 weeks when I'm tired but I can work through the tiredness. I was also afraid when I was recommended to go on it but it has made my extensive bone mets stable for seventeen months now so I love it. It's so effective that the when it was being trialled for the first time, in the US, it was a double blind study which had to be called off after only a few months because the ladies who were being given Ibrance were doing so much better than those on placebo that it was unfair to the ones on placebo. Since then there have been no more trials of it with placebo. Gather up your courage. You'll be glad you did. And, as your progression is minor you have a very, very good chance of Ibrance completely controlling it. I can't comment on Fasiodex though as I'm taking Femara/Letrozole. Good luck xxx
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Netta, Jensgotthis, Lauren, Jaylea, thanks so much for sharing all your knowledge and experience...I guess if my pet scan is good then I will continue I/F. Am I right to say if pet scan does not light up means NED just like what surgery/radiation could give? Sorry I'm hopeful...
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Wanted to share this little sweet moment of happiness with everyone...
Alzheimer's stole my sweet mother from us a few yrs before she passed away 20 DEC 16. It was a blessing for her to not know anything about my cancer and to be done with this other horrible disease besides MBC.
Hard to describe her in a few sentences because she was larger than life. She loved so many things but gardening was a big one and she collected teapots. This was one of her teapots we featured at her life celebration ceremony. This beautiful little daffodil bloomed yesterday in her teapot and speaks volumes to me about life and hope and spring and renewal and legacies...
Barbara Lou (my mom) loved God and her country and her family and all people. She married my dad at the age of 14 to get away from a Cinderalla-type story (he was 21). After 38 yrs of marriage and 4 kids, Dad passed away at work of a massive heart attack. She was called to go to missionary school after that and got a bachelor's degree in international missions at the age of 60, serving in Russia, China and Kenya.
She was an amazing person and I miss her happy, perky little presence and her optimism. I so wish she were here to help me stay positive about this MBC...but things like this pretty little teapot and beautiful daffodil make me feel her presence still...I so hope this is her being here for me thru this darkest life experience of mine...
And I hope sharing this picture and short story about her can help someone else smile thru some challenge some day soon.
Warmly, V
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Hopeful 77, if the scans show no evidence of disease, it doesn't matter how you got there (medical treatment, surgical treatment, or radiation treatment). NED is NED and is what I sincerely wish for you (and for all of us). With all treatment modalities there is a chance that there is microscopic disease left behind, but I don't think "surgical NED" somehow gives a better prognosis than "chemo NED", especially once the proverbial horse is out of the barn (stage IV).
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V, what a beautiful tribute to your mother. We live in the hearts and memories of those we have loved and who have loved us. Your mom is with you, always, and the daffodil is just a reminder of this fact.
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Gumdoctor, I am touched by the wonderful story about your mom. She sounds like a loving, giving, warm, special person. Thank you for sharing. Your description of Barbara Lou is beautifully written and full of love. I know her spirit lives on in you. The prettyteapot with the blooming daffodil is a wonderful sign of spring, of life, and of hope. You have brought light and joy into my day.
Hugs and prayers from, Lynne
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V - just beautiful!!! May God bless your momma in heaven.
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V so lovely to read your story of your precious mum x.
I am reading along with all your stories and give prayers thoughts hugs to all those with progression scans change of treatment.
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THANK YOU for your kind words and for caring and reading my post about Barbara (Mom) and the daffodil. I wrote it with tears of joy and sadness. Those of us here understand those tears better than alot of people...
Warmly, V
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Valerie,
Your mom appears to have been an amazing woman and a great example of grace in the face of trouble. Thank you for sharing
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V....my mom's name was Betty Lou, and she loved to garden, too. She loved all flowers, but gladiolas were among her favorites.
She came down with a rare form of soft tissue sarcoma in the 70's and passed when I was a teenager in high school. There's not a day that goes by that I don't think of her.
Thank you for the lovely post and picture.
L
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Dear Lita,
Thank you for sharing your story also. No one is like our mother and no one can ever take their place. For life.
Thank you also for sharing your cancer story. You never cease to amaze me with your strength and capacity to keep on moving forward through your journey. I don't know if you can ever know how much you inspire others and help us to move forward on our own journey.
Warmly, V
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V beautiful tribute to your Mom. My mom died of bc when I was 19. I think of her all the time and especially miss her when special occasions occur. There is no one like our mom
Babs
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Babs,
Thank you. So sorry you lost your mom. And to BC...
My mom lost her mom when Mom was about 4 yrs old, not cancer. I think it was an infection.
Mom's nickname was Babs when she was younger so when I saw your name when I joined this thread, I immediately thought of her.
As I wrote to Lita, I want to thank you for sharing your journey with all of us here. I am amazed and in awe when I read what you are going through and how you keep moving forward no matter what. You are helping and guiding many of us through this horrible disease to live better than we would have had we not gotten to meet you here. Thank you for your strength and willingness to share.
Warmly, V
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V,
What a lovely teapot of memories. My grandmother used to collect teapots, so we have a nice variety in our family too.
I love the story of how your Mother studied to be a missionary, and then traveled so extensively to fulfill her purpose. Now THAT’S an amazing woman! I wish I could have met her. I'll bet the stories she told were so awesome.
The story of your Mother led me to thinking about how very strong we all are to fight the MBC fight. There are days I'm sure that were difficult for Barbara Lou after losing your father, but that didn't stop her from living a very full life. So I'm grateful for woman like her to show us that we, too, can find a way to have a good life even after Dx.
Laurie
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V, I had to smile at your mom's name Barbara Lou. My BCO name is Linda Lou, because that is what my favorite neurosurgeon used to call me all the time and then would give me a hug. That nickname has followed me to the chemo treatment room, and now my nurses always say "Linda Lou" when I enter the room kind of like "Norm" on the old Cheers sitcom. Thanks for sharing the tea pots and story.
Linda
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BooBoo and LindaLou,
You two could have a duet act together with those fun names...
Thank you for reading and commenting on my Barbara Lou post. I am so pleased it spoke to some of you in some positive way as that was my hope. I spoke with her sister today, the only sibling left from her side of our family. They were very close and raised their children together. After I sent her the teapot picture via Facebook, she reached out to me. She will be at a family reunion in June so hopefully I can visit with her and some of her many children and grandchildren then. I explained that I now understand how short life really is...
I have my first scan in about 2 weeks to see how the Ibrance/Faslodex regimen is doing. From what I've read on BCO, I should not expect anything dramatic so I hope to be calm and neutral when I hear the results. TMs have been rising for 2 mos but still low. Will be interesting to see what they do in the future.
One bit of news is I have been having left eye symptoms. Tho rare, BC can metastasize to eyes. In fact, if an eye met does occur, the number #1 source is BC. I saw the opthalmologist and he ruled out BC met and primary melanoma. He had seen me 2 yrs in a row for a non-symptomatic CHRPE ("chirpy," congenital pigmented lesion with low risk to convert to melanoma). Instead, I have "vitreous syneresis" in both eyes, even tho right eye is asymptomatic. I had never heard of this before so had to do my research. Dr told me nothing beyond "the jelly in your eye is moving around due to age."
Once again, I go to one of the highly respected NCCN facilities. But this is how they communicate info to me...I get very frustrated when I am talked down to like I don't have any hope of understanding any of this technical information. Not only am I a board certified dental specialist with 13 yrs of college/31 years of clinical experience, and a graduate of this same very highly respected university, I am a patient safety professional working in the field of patient safety for over 10 years. From a patient safety perspective, they are an absolute failure at patient education. But I digress...
On my own, I learned I am going thru posterior vitreous detachment, commonly related to aging and that most people will experience this condition at some point. I am 60 yrs old but I do not think of this as "aging"...As I read further, I found some writings indicating that cancer meds I have already been on (estrogen deprivation) cause accelerated aging and increase the risk of this posterior vitreous detachment.
I don't know if any of you have heard of this or gone thru it but what a shocker on top of everything else. This is actually "good" news after thinking I was going to lose my eye and the ability to do any more periodontal surgery in addition to everything I have already been through and everything to come in the future...but current significant vision changes and severe stress I have been under leading up to this news has been really draining and exhausting.
Bottom line: 2-3 mos of vision changes but things should resolve once the vitreous detachment is complete.
I did not mention any of this before I knew what was going on. Sharing here in case it helps someone else dealing with same thing.
Warmly, V
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Gumdoctor, I also experienced vitreous detachment after a year on AI. A little research led me to (I think) NIH research paper on AIs and vitreous detachment.
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Another vitreous detachment, torn retina person here. I had to have a vitrectomy in early January, as my right eye's vision was 70% occluded with hemorrhaging. Ten days of staying quite still in a certain position for the eye to heal, and one anticipated cataract surgery should put me back right.
According to my eye surgeon, our forced menopause accelerates the eye's natural aging. If you are exposed to steroids, it can also hasten cataract formation. Each time I have chemo, I notice my good eye degrading, due to the steroids. I take as minimal a dose as I can, but without it, I spend far too much time retching.
I'm six years in with bone mets and small liver lesions. I've had three bouts of radiation for bone pain. This eye mess has been the worst SE of all.
I would recommend that all patients undergoing chemotherapy get eye oversight. Those with myopia should be proactive about any retinal tear symptoms (floaters, flashers, and dark spots or ribbons), as we are prone to tearing as we age due to our eyeball's elongated shape. To manage cataract formation, we should avoid unnecessary steroids. For example, I was using a topical steroid spray for nasal allergies; I've stopped that now.
My life would be much improved with decent vision. I've had to cut back on driving, can't drive at all at night, and spend much of the day feeling like there is something smeared across my eyeballs. Without cataract surgery, my "bad" eye can only be corrected to 20/80. Reading gives me eyestrain, so I take a listening nap in the middle of the day with a cold compress over my eyes to rest them - thank heavens for podcasts and audible books. Without it, I have a splitting headache by evening.
If anyone has hints and tips for making it through cataract surgery, I'm all ears. I have my first appointment with the cataract surgeon April 11th. Have to get my spouse through their colonoscopy April 5th. They've never had health troubles, so the whole prep process, and sedation is slightly freaking them out.
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Thanks for the eye information. I mention to my oncologists that my eyesight is deteriorating and they look at me like they don't hear. Yeah, I am tired of being talked down to by people who are either uneducated in the topic I am raising or know less than I do. Very tired of it. Coming here and peer to peer conversation with knowledgeable people is such a blessed relief.
What are the symptoms of vitreous detachment, exactly?
>Z<
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Hey ladies, I m thinking to get second opinion but feel uncomfortable. I like my MO but want to have a piece of mind. Have you girls got a second opinion? And if yes how your dr reacted
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V,
You’re on a roll! This topic about the eyes is super important, and no one yet has talked with me about steroids, chemo, or the potential for detachment. Once again, I’m really grateful to have you ladies (and men) who post to tell us about these potential side effects.
I am on steroids (130mg/day) for Sarcoidosis, and I have uveitis as a result. Recently, I’ve noticed my eyes are getting worse, tearing a lot, and I’m having trouble focusing at times. I made an appt. with my eye doctor for next week to get checked out.
Thank you, V, for bringing this to light.
Happy Easter to all.
Laurie
P.S. My sisters thought I looked like Yoggie the Bear’s sidekick when I was really little, so that’s where my nickname came from.
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The major symptom I had was something like a large “floater” in my right eye - I described it as a large dust bunny. Worst part was always thinking the cat was sneaking up on me. Didn’t interfere with vision as much as what I have going on now, which is inflammation of the cornea. From dry eye.
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Z -
As blainejennifer wrote, symptoms are often similar to retinal detachment with new floaters, flashing lights, etc.
Mine started out as a blurry spot then things progressed rapidly in just 1 week. New HUGE round floater that swirls right in my line of sight, many small black dots in upper left sextant of field of view and finally a huge, flashing jagged line that went from bottom field of view to the upper left sextant black dots region. I was really EXTREMELY concerned, not just about a retinal detachment (which I had heard of) but jumped straight into eye mets assumption.
I was able ro see the opthalmologist within 1 wk of calling but waited 2 wks to call...and I have no explanation for why I waited...
He was very dismissive but reassured me that he saw no sign of mets or retinal detachment.
Once we know what to search on, we can find plenty of valid info online. I read for several hours the night of my appt and figured out posterior vit detachment from the dr's "jelly" movement comment.
Glad this discussion is helpful. Had I heard of this b4, I probably wouldn't have jumped to the eye mets assumption so quickly and so intensely. I overly stressed myself over it. So another goos leaning opp for us all - Be slow to respond to what we THINK is happening until we have the FACTS.
Warmly, V
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great discussion re eye issues. Mine get very dry and blurry. Cant do much reading and writing anymore. Frustrating. On low dose steroids for brain mets. I know thats not helping.
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blaine, I had cataract surgery on both eyes a few years ago. The surgery itself goes quickly, about 20 min. One eye is done and the other is often done as well, anywhere from a week to 2 weeks later. You will be taking a lot of drops prior to surgery and post surgery. It doesn't hurt. You may experience glare post operatively for a week or so and a little pressure. They will give you Versid which is what is used for colonoscopies. I'm a super metabolizer (unusual of course) so it didn't work for me and I was wide awake for both surgeries. That was fun! You can choose which intra ocular lens you like to have put in. My vision acuity is better than pre cataract surgery, and you will be surprised at how bright colors are without the yellow haze of a cataract. Good luck. Oh.....and it looks very weird to see 2 white orbs on a brain MRI.
Lita, how are you doing?
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