Bone Mets Thread
Comments
-
Cling hoping all goes well. Holding your hand to keep you calm
Bab
0 -
https://community.breastcancer.org/forum/79/topics/845005?page=1#idx_1
Here is the link Radical Remission Book Club. Please share!!
0 -
Thanks for setting up the thread!! Looking forward to seeing how people do.
0 -
Hi Ladies,
It has been over a month since my last post and I do apologize for not being more involved. Nice to see the familiar faces on here and certainly hope we haven't lost anyone since I was more active on here. To the newcomers, welcome to this support thread and I HATE this disease (even though I'm not the one with the Dx).
Wanted to give an update on my mom, she is on here somewhere so hopefully she doesn't mind me posting. I'll have to get her username for you all now. She certainly needs the support as I am not sure if she is posting.
Since her Dx last November, she tried a few regimes (hormone based, radiation, Falsodex, then Xeloda) and has had two PET scans. Within a couple months, the cancer spread from spinal/hip bones to spots in the liver and is now extensive liver mets, extensive bone mets, and is starting to affect soft tissues up towards her ribs/lungs, etc. Doctors have been SLOW (esp. since her PCP went on maternity leave). She qualifies for a Phase 1 / Phase 2 trial in Boston where I live. I should be able to rearrange things to help get her to appointments.
Her trial will be sapacitabine for 7 days then Seliciclib for 3 days, week off, and repeat and she will lose her hair - she hasn't lost her hair yet from other medications.
Doctors wanted her off the xeloda for 3 weeks so she could get a liver biopsy to make sure the cancer hasn't changed. Due to the timing of the trial, appointment scheduling, and slowness of everyone, it is going to be 5-6 weeks before she can get the biopsy, then wait for results, then start chemo again.
As you might recall, we kept the secret in the family for some time but it is becoming all too real so my parents have finally told others but not to the full extent (liver, etc.).
As much hope as well try to keep, it's hard as the medications haven't worked and it has spread very fast in just 6 months. I am the most positive person in the family (although definitely managing my own expectations) and have had to talk reason into everyone of the pros and cons of this clinical trial versus going on Taxol next. My dad really wants her to do the Taxol (esp. since the trial is phase 1/2) but there are also benefits of the trial (esp. if she loses her nursing job and health insurance).
As far as my own story, my cousins (my age) are BRCA2+ and I'm going for the genetic testing in July. I also haven't told my workplace yet (I work 70-90 hours a week in a 'wall street' type job - even if others are understanding, being out more will definitely affect my career which is really tough on me). Needless to say, I cannot be with my mom anywhere as often as I need to be right now.
Mom - if you are reading - so sorry to give our life story but these ladies are phenomenal and survivors!
xoxo
0 -
RACHEL!! I love how well you're doing! Beautiful family pic and precious little pup! Hugs, Carol
0 -
Rachel,
Loved hearing your good news. It's the best medicine for all of us! Plus, your family's smiles are super to see!
Babs
0 -
Daughter- sorry your mom is going through progression. It's hard to comment because there is no history on your profile to know a timeline etc. Dana Farber is a good choice for opinion in Boston. That's where I go and they would really encourage a trial before taxol if the biopsy etc pointed to that. Carol
0 -
DaughterLove,
I have missed you here and have wondered how your mother was doing. I am sorry that things have not gone as well as we had all hoped. Is the clinical trial that your mom will be participating in at Dana Farber? There are several people on this thread who are treated there. I am sure they will give you some positive feedback.
It is always difficult to choose between a known treatment like Taxol and a clinical trial. There are, of course, many benefits of a trial. For example, the level of attention given to each patient is higher, the testing is more thorough, the over-site is more stringent, and the quality of care is consistently high. Your mom will also have the latest available medications before they is available outside the trial setting. I hope your mom sees good results on the trial. It is unfortunate that there is so long to wait before she can begin, but I know that specific guidelines must be followed in clinical trials.
DaughterLove's mom, if you are reading this, welcome. I am sorry you have reason to be here. Your daughter has won our hearts. As you must know, she loves and cares deeply for you. You are both in my prayers.
Please keep us updated as things move forward. (((Hugs)) to both of you
Lynne
0 -
Rachel, I love your family picture and your very happy update!
Milaandra, congrats on the great report!
Cling, we will be thinking of you as you go through your examination and hoping for a good report. I just got past that intense worry and have a pretty good idea how you're feeling right now.
Carol, I love that you added an avatar pic (I need to do that, too)! I have to say that you look at least 15 years younger than you are. I had a completely different "face" in my head when I thought of LovesMaltese -- you know how you make up a face for people when you don't know what they look like? In my brain, you had white hair, haha! Glad to hear you are doing so well. I think the thread for "Radical Remission" was a great idea and will definitely follow it.
I know I forgot some people here, but I've been following along and thinking of all of you and wishing you all peace and healing.
I had my routine PET scan on Monday, almost six months since the last one. I got very lucky in that the center I use had just instituted that day a new policy to have the radiologist speak with the patient right after the scan with preliminary results. So instead of having to wait possibly until my appointment with my MO on 6/16, I found out right away that...get ready for it...he saw nothing! The report was in my electronic chart a couple hours later. The word "sclerotic" was in there to refer to the single bone met I had upon mets diagnosis last fall. So, nine months after diagnosis, I've had two clear scans.
0 -
Lovelife- only my little Maltese has white hair and if I didn't color mine it would have grey highlights! Congrats on your scan. I hope your new screen name will someday say Loveslife95.
0 -
it is 9:29 pm. Still sitting in the MD Aderson'swaiting room, after drinking the terrible barium, waiting to be called for CT. Ahhhhhhhhh, HUNGRY!
0 -
thank you love Maltese. Maybe we should start a thread of Boston ladies that go to Dana Farber. I know my mom is scared to come into the big city three days a week now but I'll be there to help. I've updated my profile (with her Dx. and treatment) best I can from my phone and will definitely add more to it.
Thank you 50sgrl, your words are so kind. Those are all great reasons to do a trial, I'll def. Pass that info along as some people can be scared of the unknown with trials although cancer is all one big unknown.
I did a search on here with her new treatments and one lady has been on the trial for 5 years wHicham gives hope!
And given this is a bone Mets thread. Her latest pet scan showed 'some' improvement in her bones. So that's good. Now to stop it from spreading in her liver!
0 -
Lovelife, glad for your results. What a great idea for the radiologist to meet with scanned patient right afterwards to tell preliminary results.
0 -
It's a really great idea, and would save me hours of looking up terminology and trying to decipher radiologist-speak. Not to mention eliminating all that scanxiety wait time.
0 -
Good morning, ladies. Once again, I've been away and have a lot of catching up to do, but I wanted to share something I learned yesterday when I went in to have my Xgeva and Faslodex shots. I saw my local onc's PA this time, and we got onto the topic of scans, and she shared that our local hospital -- which is actually quite large and highly rated -- now has a resident program (which I knew), but that residents are now reading all scans -- at which she rolled her eyes and said it's made life "interesting." Just thought I'd share this as something else to watch out for, especially when we get those off-the-wall and sometimes scary observations in our scan reports. I have nothing against residents, and for all I know UCLA may use them up to a point as well. (I'll have to ask the next time I'm there.) But I certainly do not want to rely on the input of a resident when it affects tx decisions, and I worry about how good mammogram readings can possibly be w/a resident's very limited experience. Yikes!!! Scary, if you ask me!!!
I'll try to catch up on what I've missed here a bit later...
0 -
Rachel, The photo of your family is really great ( and Mac too)
Cling, How did the CT go?
Lynne, Thanks for asking. My dh's prostate test came back 0. So far so good. He may have a base line bone scan next week but will see MO to discuss that. He doesn't talk about his cancer to me at all. It's frustrating but I try to give him room to deal with it the way he wants to. After my Zometa yesterday, I had a basic metabolic test run. It showed very low potassium which may account for my calves and thighs cramping and my irregular heart beat. Having EKG next week just to check heart out.
Deanna, Thanks for the heads up.....we all want the most experienced to read our scans don't we?
0 -
Lindalou- well that makes sense! Did theysuggest a supplement?
0 -
Lindalou, I am relieved that your dh's test came back 0. WOOHOO! I know how you feel about your husband having to deal with his cancer in his own way. My dh told me that he isn't going to worry about a recurrence. He is going to enjoy life and assume that he will never have a recurrence. I think he has the right attitude. Of course, I am already worried about his scan that won't even happen until October! I must be crazy. Did your MO mention what might have caused the drop in your potassium level? I hope your EKG is okay next week. Let us know what you find out.
Deanna, I had more than a few "discussions" with residents when my DH was at Brigham and Women's. Luckily, they quickly learned that I did my research, so they knew I would question them. They were not always right. There are good reasons for having seasoned physicians overseeing residents and fellows, but sometimes I think that the lines become blurred when the responsibilities are assigned.
Cling, How did your appointment go? Do you have the results of your scans?
Cristina, We haven't heard from you for a while unless I missed your post. How was your trip to the beach? How are you doing on Xeloda? Are you feeling okay?
Lynne
0 -
Lovelife- more places should do what your center did- give a preliminary report to help their patients avoid scan anxiety. So happy about your results!!!!
Lindalou-happy to hear about your DH's results too!
Cling-how was today?
Babs
0 -
Having a bit of an issue today. So the first question out of my mouth when I saw my last CT scan results was is it in any organs? I was told no by the study nurse and the oncologist and my sister and I left happy in the knowledge the everything had shrunk. No I am sitting at home with my copy of the CT scan and I'm reading through it again when I see " A focus of linear atelectasis is present within the left lower lobe. " why did no one say anything is this cancer? I'm loosing it and it couldn't be better timing the whole family is here to celebrate my birthday and I just want to hide
0 -
Wendy, I think that atelectasis is a partial collapse of the lung. It is commonly seen on X-rays and CT scans and are not serious and not cancerous. I think that a couple other people on this thread recently had lung collapse reported on their scans, too. Carol might have been one of them, and there was a notation that it could have been from taking a deep breath as you doing doing the procedure. I believe she was told that it was nothing to worrying about. I am sure others will chime in with more information. In the meantime, try to relax and enjoy your visit with your family. Happy birthday!
Lynne
0 -
Thank you Lynne I think you just saved the day
0 -
That's what I'm reading, too, and they say it's common after surgery, for instance, and usually short term in adults.
0 -
Wendy- glad I sent you my report. Now relax. We can work on things we can control and that is stress. Happy Birthday!!
0 -
Lynne - just want to say you're an inspiration. Hugs.
0 -
Hi Wendy,
I have had atelectasies in my ct scans as well. Since I see my results before I meet with my MO I always have a list of questions for her if she doesn't cover some of the things I see on my own. She had not commented on the atelectases so I asked about them. And as LovesMaltese said they are nothing to be concerned about. Our lungs are made up of these little sacs called alveoli and sometimes they don't inflate properly due to some obstruction, like mucus, causing collapse of of that lung tissue and that's what shows up on the scan. It is often the result of anesthesia or relic from pneumonia. Sometimes they go away, sometimes not. The bottom line is, unless a large area of the lung is affected, they are nothing to be worried about.
Cathy
0 -
I love you guys I really do all of you wonderful woman. I have another question what is the difference between lyric and sclerotic lesions. Google is not clear enough for me. I believe it was brought up earlier on the thread bu I can't seem to find it. I will refuse to worry today and I wish all of you a great day .😊
Wendy
0 -
That depends. Were they lytic lesions and are now sclerotic lesions, or were they sclerotic right off the bat? Sclerosis, as a term, seems t refer to a calcification. In sclerotic mets, it's some weird build-up, as I understand it. If formerly lytic lesions are now sclerotic, that's the thing I was checking about...it seems to be the first step of the healing process. I read that it can take years, even decades, to turn back into normal bone, though.
0 -
I apologize for posting on this thread if it is not the right one or inappropriate (please let me know) but those of you on here have gone through what I fear I will be going through and I just had some questions. I also don't know the technology of doing the dx information that appears below everyone's post. Perhaps someone can help me with that.
I am 14 years out from my original diagnosis of stage 1; grade 3; 9mm tumor, sentinel node biopsy negative. I was 51 at diagnosis; I am now 65.
Lumpectomy, left breast.
Radiation, no chemo and started on tamoxifen for several months followed by 10 years of femara which ended in 2013.
I had a bone scan 4 years ago - it was negative.
I have severe and chronic back issues for most of my adult life (I wear a back brace) and have had these pains along my ribs and stomach that pre-date my breast cancer. Two doctors diagnosed it as costochondritis. These pains as well as some pains in my upper back started last week and I was scheduled for my yearly visit with my oncologist. I knew if I told him alarm bells would go off and so now he's ordered rib x-rays. Four years ago he said I was far out to have bone mets (turned out my symptoms then - which were different than now- were due to low TSH and low potassium). Now I am 4 years past that. But I also know that breast cancer is the gift that keeps on giving. No one is ever out of the woods, so to speak.
So, my questions are: How far out from your original diagnosis were your dx with bone mets? Were you on femara or arimidex at the time? Or anytime before that? How are bone mets treated these days - as a chronic condition or is it mostly palliative? I am scared to have the x-ray. I am just so tired of dealing with this.
Also, 11 months after I was diagnosed with breast cancer my husband was dx with esophageal cancer and he died 2 years after that at age 56. I have been a widow for 10 years. If I do have bone mets there is no one to take care of me like I did him.
My heart breaks when I read everyone's story. Blessings to all of you.
Thanks to everyone.
0 -
Happy Burthday Wendy. Enjoy your time with your family!
Babs
0
