Bone Mets Thread
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olma i am not on xeloda that failed me 2nd treatment i am on Erubilin chemo
Thanks ladies
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Nicole that is wonderful news! So happy for you!
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Nicole, Fantastic News!!!
It goes to show how each cancer is so unique, in an earlier trial they reported no big difference between Xeloda and Halaven, both with the same PFS (4 months) and ORR (11%), and here you are having such a strong response to one and nothing to the other! There are all kind of combos being tested with Halaven too, so those may be a future options, too...
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Thanks Ladies.
Wow Cure....I didn't know that about them saying Xeloda and Halaven having same PFS....
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Waving my hand here. I got three good years out of Xeloda. Halaven is the only treatment that has totally failed me. Stuck it out for five months but it never kicked in.
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Ok ladies...just got more good news... here are the results of the MRI C Spine...
"1. The enhancing lesion involving the posterior elements of C7 has
diminished in size/conspicuity compared to the prior examination,
consistent with disease regression. There is no canal compromise or
epidural tumor.
2. No new enhancing lesions are identified."0 -
Nicole - Awesome
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Excellent news Nicole!
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Nicole--- Posted on the other Thread, but WooHoo again.
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Hellou ladies, I dont post often, but I read your stories, so I feel like I know you. Please did any of you had small progression on bone, got it irratiated and stayed on the same treatment? I had irratiated single met TH10 last year and startes Kisqali and faslodex, at the end of July my Mri was great and last week PeTCT showed activity in TH9 -6,6 Suv, lowered met activity in TH10-3,1(it was 8,8 went to 4,8 and now 3,1) and possible met in L1 (Suv 2,5). Plan is to get biopsy, SBRT again and MO wants also change treatment. I wish to stay on ciclibs longer. Piqray or Verzenio are not approved in my country yet. My husband has pharmaceutical distribution company, so he is willing to buy it for me. I also had met in liver in 2017, after resection my liver is clear up tu now. Please do you have any advice? Thank you so much. Marketa
PS Nicole I am happy that treatment finally works for you. My friend just started Halaven today for liver mets. She is doing combination of local liver therapy (resection, microvave Heating, etc) and chemo, hormono for 5 years and doing fine. So yes it is possible
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this is great, Nicole! Scratch
Xeloda,hooray for Halaven.0 -
Hello,
I just received my pathology from colonoscopy. It shows mets to colon. Thickening has shown up on previous Pet Ct scans since 2018 and was listed as possible colitis. But colonoscopy has identified it as breast cancer mets. MY extensive bone mets were stable in August. The colon seems stable as I have no symptoms and the previous reports never showed it as progressing. So I am going to see what MO says.
Does anyone have any insight/experience with this. I read that colon cancer mets are rare in my type of breast cancer, but I guess I shouldn't be surprised since from the beginning of DX if it is gonna happen it will be happening to me
Thank you and I always hope for the best to all.
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Thank you so much my friends !!!!
Bootsie did you have any symptoms?
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No symptoms...the thickening has been there on Pet/CT since 2018 without change and the Colonoscopy was scheduled to get a definitive DX.
Your good news is so nice to hear!
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Bootsie7,
I also have lobular cancer, and it goes to some very strange places. My first recurrence was to a polyp on my cervix! That was in 2006. So I am not that surprised that it's showed up in your colon.
KBL might be able to offer some insights -- although I think her lobular mets are to her stomach. I remember something about her colon or her esophagus as well. I think she's traveling right now, but should be back on the boards soon.
I'm just curious -- if it showed up on a PET scan in 2018, why didn't they do a colonscopy before this? And have you been on any other treatments since that time other than Arimidex?
Hope your MO can provide some answers for you.
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Hi BevJen,
Well in October 2018 I had some very severe complications to chemo (stage IV was missed on MRI) I took Ibrance for 2 weeks in April 2019 and ended up in hospital again!
Every scan has stated colitis. Then my Mo left in 2019 and had to reassign to another ..always troublesome. I may be changing MO again. Hard to find someone.
Had to cancel colonoscopy scheduled for latter part of 2019 and jumping into 2020 has brought much delays ,change and loss of family members. (not covid)
So here I am. It has been there all along...I have no symptoms, but I never have had any with the original DX of the Breast cancer in May of 2018.I have side effects from Anastrozole but doable.
Hard to know sometimes if it is cancer..RX..or age related.
I keep telling this cancer (though I am not happy about it) we can share the body but if you kill me you kill you too.......
not sure that thought process is working.Today I feel so numb
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Hi Marketa,
If I understand your question correctly, I think I can say that yes.. there have been circumstances where the bones are acting up for me but the rest of me remains stable. I'm actually going through this situation right now. My bone scan, CT scan and a brain MRI all indicate everything is holding stead on Faslodex/Verzenio. However, areas of my bones that I know I have problems (right hip, lumbar spine, right ribs, neck and skull mets) began flaring in July. The skull mets situation steadily deteriorated over the summer and early fall to the point where I am dealing with constant, often severe, headaches. This lead to the brain MRI that thankfully came back clear. I am now scheduled for a round of radiation treatments to my c-spine and skull to deal with these mets.
Despite this, my MO and I are holding steady on treatment. He indicated even a very small amount of growth or change (a millimetre) can cause issues pressing on nerves and he is convinced that this is not degenerative changes based on the symptoms and location. The fact that it is clearly a very small amount of change, my lungs are unchanged and there is no progression to the liver makes us want to continue on with the current therapy. A small bit of bone progression is not the end of the world as far as I'm concerned. So, we treat and scan again in three months.
I hope this helps. I'm a big believer in staying on a treatment, particularly hormone treatment, for as long as possible. I burned through several treatments early on in my stage IV diagnosis which made me very nervous...
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Sadiesservant,
I'm with you on continuing on treatments as long as possible, especially if they are holding things relatively stable.
Bootsie7,
I feel for you with all that's gone on as you described. If you are not at a teaching hospital/large academic center, it may be worth it for you to try and affiliate with one for your oncologist. If that's not possible due to where you live, then you may at least try to do a consulting/second opinion with a doctor at such a center. I think my MO is incredibly intelligent and incredibly knowledgeable, but I also believe in getting other docs involved who may shed a different light on what's going on with my particular cancer. Lots of docs are now doing Telehealth visits. I've also found that many docs who are researching in a particular area will be quite responsive to emails sent to them asking questions.
Good luck to you, especially in finding yourself a dependable MO. Hugs.
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BevJen,
I did have a second opinion at Northwestern in 2019. At the time I didn't feel that there was much difference in opinion regarding treatment. They advised to continue with current treatment and they would work with my local oncologist who was in agreement. Then my local oncologist left practice. I was so sad, we had a good rapport. I did go back to NW for a follow up in Nov. 2019 but the visit left me feeling like I was in the wrong place. The appt. felt rushed and the questions asked or lack of left me questioning if it was worth the trip.
So I will be talking hopefully soon to my local MO.
I will also email ail these latest findings to NW MO. can't hurt, might help !
Thank you for your thoughts. I can see you are going thru a lot too...hoping for good results!
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Bootsie7,
Thanks for clarifying. As a matter of fact, my second opinion doc is at Northwestern (Dr. Cristofanilli). His opinion has caused my regular MO to re-think some things, I think, because he is a big proponent of liquid biopsies, and his view on certain drugs is a little bit different than her. Of course, I say this about the rethinking, but maybe it's just muddied the waters -- I don't know. I have also consulted an IR there a couple of times too.
But, as you say, it's hard to figure out exactly who to see. For me, I think the intro of another doc did affect my relationship with my primary MO, in a good way. As my husband says, I'm probably not the typical patient (I think that's true of a lot of us on BCO). Sometimes I think my primary MO has "Bev exhaustion" because I ask so many questions, based largely upon my own research. But I feel that I need to do this for myself, and also to make sure that my MO focuses on my particular situation. As we say here often, cancer is a very individual disease and we all need to be looked at not just according to the studies, but as individuals.
Good luck!
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Bevjen, I like the term "Bev exhaustion"! I am the same way - ask my MO too many questions. But we have to speak up. If I don't understand why she is doing certain things, I persist till I can get answers. I am a scientist working in oncology field, in a big pharmaceutical company. My MO knows this and talks to me in medical terms explaining the mode of action of the treatment regimens. I respect her for this.
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S3K5,
Just responded to your news on the liver mets thread. I am NOT a scientist, but innately, I am a researcher -- I am an attorney and a law school professor (newly retired) and I just can't stand it when docs try to water down what they are saying so that it's meaningless to patients. I know that's not everybody's cup of tea, but I just have to ask questions.
Wow -- and you have the background knowledge to want to get to the answers -- I have to muddle through reading PubMed articles, my new hobby!
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Interesting article for clinicians on bone metastases and treatment options:
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JoynerL - Good article. It answered several niggling questions I had. Now I understand why I had only one dose of palliative radiation after surgery on my femur. It also helped me understand the pros/cons of various scans. And I always thought they started me on Ibrance too soon after surgery. To some extent, I think this article backs up my claim.
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Thanks Lynn, that interesting, appreciate you posting it. FAIR WARNING lol have a dictionary handy.
Hope you're still doing good on Zeloda. I was on it for 8 mos, while it didn't kill any cancer, it stopped progression, which to me, is a win. But finally it stopped, I'm on AA, no side effects!
Wedns had a MRI of brain looking for Mets. I called then nurse the next day asking for results. She said you want me to read the report to YOU? (what a crime!) I told her ma'm they are looking for brain mets. NOW you know, why on earth can you not tell me? So, she said they found no mets!!!!! Pause God, They did find ????? my brain was so wrapped around NO Mets. I didn't hear what she said.
Didn't mean to type so much, just wanted to thank you
Have a great day HUGS
Sue
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Snooky--- Good to hear from you!!!!! Girl, you type as much as you want. Woohoo on the no brain mets!!!!!! Come visit here anytime, miss hearing from you.
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Well hi there Candy! Thank you for the kind words.
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Great news Snooky!!!
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thank you so much, Jackie
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I’m new at this, what is lobular?
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