Bone Mets Thread
Comments
-
Babs - I think your doctor is onto something very cutting edge. From what I can figure out, your doctor suspects your cancer is androgen receptor positive. I am wondering if your recent metastasis has been biopsied and tested for this, or why your doctor thinks you might be AR+.
The drug was initially tested on prostate cancer patients. There is a trial that has been going on for a couple of years on prostate cancer, so the side effects are known to your doctor. The breast cancer trial has also been going on for some time at MSK. I expect that your doctor is suggesting it because the results have been good and the side effects tolerable. He/she may not be able to answer your questions directly but you should be able to get some general answers about risks and response rates on the ongoing trials. MSK has hosted most of these trials.
I am interested that you mention that you will be on chemo. Do you do the VT464 after the chemo or during the chemo. All the trials seem to be for VG464 alone.
>Z<
0 -
Z what I wrote was a little unclear My choice is either the study or chemo-not both! Actually we don't know if my cancer is androgen receptor positive. That's one of the issues I'm having. They tried twice with biopsies to get enough tissue samples to know my mutations and genomes but couldn't get enough. I'm going to ask her if we can try again so we're not shooting in the dark
Babs
0 -
I hope you get a successful biopsy, but if choose to shoot in the dark, it won't be the first time. Even with a good sample, the rate of error in the hormone receptor testing is significant so it's sort of a crap shoot anyway. Anti-androgen therapy generally has demonstrated good results. The drug you are looking at is very new and probably only a handful of women have taken it, but many more women have been on anti-androgen therapy.
>Z<
0 -
Following bone scan last Friday because of increased pain, MO is ordering a CT scan. There seems to be some changes on bone scan but don't know the specifics yet. CT should happen this week and results on Monday.
0 -
Best wishes Linda. The waiting is hard!!
0 -
There was some talk recently about Ibrance and tumor shrinkage. I saw this today on Pfizer's Ibrance website:
Additionally, the Overall Response Rate (ORR), which measures tumor response to treatment, including tumor shrinkage, was assessed in patients whose disease was measurable at the start of therapy.
The results showed that the ORR of patients taking IBRANCE and letrozole was 55% — meaning 55% of patients saw their tumors shrink in size — compared to 39% who took letrozole alone.
0 -
Best of luck Linda!!!! I hope no crazy stuff with the MRI this time.
Hugs. Chelle
0 -
Linda, sending prayers and positive thoughts!
Lita
0 -
Agree, hope there's nothing crazy to report on your upcoming scan.
I got the results of my MRI last week, arthritis, avascular necrosis and bone mets all rolled into the femoral head of my left hip. Surgeon wants to replace my hip ASAP as I am in a lot of pain and getting pretty immobile. His scheduler will call me today.
Amy
0 -
Linda, I will be thinking about you this week as you get your CT scan. I hope you receive good results on Monday. This cannot be a fun time for you as you await the scan and results. You know you remain in my prayers.
Amy, That is quite a combination of things all piled together in your hip. No wonder you are experiencing so much pain. I hope you are able to have that hip replaced soon so you can start on the road to recovery. Keep us posted.
I met LovesMaltese, Bosco 2602, singlemom1, Crittacat, and pajim at the Dana Farber MBC forum last Saturday. They are all wonderful women, and I enjoyed seeing them face-to-face. Dr. Wagle from the MBC Project was one of the speakers. He sat with Carol and me during the lunch break. It was nice being able to talk to him informally. His team's work is so important to us.
Babs, I am looking forward to learning more about your next treat once you and your MO have made a decision.
I made it through one cycle of Ibrance, but my dose will be decreased for round 2. My blood counts tanked badly, and I am still waiting for them to rebound enough for me to start the next round. On a good note, my DH and I will leave for 10 days in Hawaii on Sunday, with or without Ibrance. I am looking forward to getting away and relaxing. It has been a stressful year for us.
Has anyone heard from Dee
Have a good day everyone.
Lynne
0 -
Lynne, will you carry me in spirit to Hawaii? I've always wanted to go...have a great time and be careful around crowds.
Amy
0 -
Guys, I am behind on following up on all posts. Sorry, but it's been one thing after another. Before I get a chance to get updated on all there is, I am behind 3 pages! I have a question.
Onco called frantic that on last week's BT for Dani, they checked her tyroid (bcs she was loosing weight), but she was loosing weight, because she had Rads to the sacrum and to the cerebellum, and she had nausea, vomiting and not eating before procedure as to not have nausea. Anyway, the test came back TSH normal, but T4 above normal.
Did anyone have this experience? She never had problems w the tryroid before. Do you think something is going on in the Pituitary? Dani did not wanna run to another doctor, Onco wanted her to go to an Endocrinologist. She told them she wanted to redo the test and make sure it's not a fluke. Does anyone know how urgent is something like this?
Another thing to think about.
0 -
Thank you all you lovely ladies for your good wishes.
Amy - This is certainly moving fast! Your docs seem thorough and on top of things. Best of luck with surgery, will be with you in spirit.
Lynn - Not only am I jealous of you meeting those gals but of your trip as well! You both deserve that beautiful vacation!
Mommal - My only input re over active thyroid is that my sister had that many years ago. I remember she had lost a lot of weight until they found the right med, but I don't know what that was. But she was literally melting.
0 -
Hi everyone, Lynn I too am jealous of meeting ftf with those ladies and your well deserved trip. Unfortunately Ibrance/faslodex combo has failed me and moving to Xeloda starting in three weeks. First I'm gonna get about 10 radiation treatments to my left femur and knee. Anyone have any input on Xeloda I'd appreciate comments suggestions for combating se"s etc.
Aurora
0 -
' Lynn sounds like the perfect medicine for you and dh.
Amy the best of luck to you. You seem so active. I bet that will help you recover from what ever is ahead
Aurora I look forward to your post. You always read so hopeful to me. Xeolda is on my next list as a possibility.
Just now got a call that my brain. Mri is positive for skull mets. They want me to meet with RO asap. Then meet MO next week. Feeling terrified in this momment. Carrying this brave group of women in my pocket. Pet/CT tomorrow. I just want some good luck out of this week.
0 -
Mary, I understand why you are terrified right now. This disease justdoes not let us have time to relax. Take some deep breaths and remember that you are not alone. I will say a prayer for you, and I will be thinking of you tomorrow and all next week. I am putting my arms around you in spirit.
Hugs from, Lynne
0 -
Aurora and Mary - sorry about darn progression.
Aurora - Best of luck on Xeloda and with rads. I follow the X thread once in a while and a lot of gals have very good results.
Mary - I just wish I could take that feeling away from you. Count me in your pocket for sure.
BIG hugs to both of you.
0 -
Aurora, check the Xeloda thread. Lots of info on it as far as SEs, etc.
0 -
Mary, we are holding you in our hearts as you deal with skull mets. Prayers for the right treatment to knock them into next year.
Amy
0 -
Cross posting with Faslodex girls thread.
Interesting doctor day. I had my last rad this morning followed by seeing my RO. All seems fine. Minimal se this time. Little bit of sore throat- but that's it.
Then I went to my MO for monthly appointment and treatment. (As a recap- I was on Ibrance/Letrozol & xgeva for a year. Since June I've been on Faslodex and xgeva). TMs having been rising dramatically since last spring and have kept rising since treatment change. Pain and PET/ct a month ago caused the rads treatment)
Anyway, MO surprised me by not doing a TM test and saying we were going to move up the PET/CT a month and run it the end of October. She said there was no reason to do the TM and "worry ourselves." But, now I'm wonder why she feels the need to hurry the PET.
A little nervous here, but I'm glad she's being extra careful.
0 -
Mary and Aurora-so sorry abut your progression. Tomorrow I find out what my next treatment will be So many thoughts.
As far as Xeloda is concerned, it was the only treatment that actually decreased my mets and brought me to NED-if only for a few months. Before you start Xeloda, start taking a probiotic to help against the stomach issues- I never had any. Also start slathering up right away on your hands and feet. The HFS was the hardest part of the treatment. It doesn't start right away but builds.
Kaption-sounds like your MO is being cautious- which is so much better than waiting and having a bigger issue.
Amy- wow- that's a lot for one poor hip to have to deal with. Hoping the sx goes well for you!
Lynne- how nice to meet so many of our BC sisters-jealous!!!! And jealous of your trip!!!!
Momall-I think of you and Dani all the time and am sending you hugs and prayers.
Babs
0 -
Mary and Aurora, I'm so sorry to hear of your progression. It's so hard sometimes to stay positive. I thought about this very thing yesterday for quite a while.
Babs, will be thinking of you tomorrow.
Having a hard time with so much of this journey. I do ok for a few days, then I fall into a seriously dark place. I'm fighting though to stay positive. I want three to five years on Femera, I think I've read where there are some out there who have gotten a long time on Femara. I want so badly to be one of those people. But I'm not sure the odds are in my favor. This is such a hard road, and I haven't even hardly begun! You ladies seem so much stronger than I will ever be.
Will be thinking of each one of you.
Gracie
0 -
Good luck on your scans Linda crossing fingers and toes😊
0 -
Hello All, Let me introduce myself. My name is Catherine but go by Cat.
I found out I have ER+bone mets by accident, 2 lesions under 2cm, one in sacrum one in iliac crest.
The sacral lesion causing increasing pain where I previously had coccydynia. I am due to get them treated with radiation, simulation is tomorrow , rads start Monday. 20 Tx (5 per week X 4 weeks)
I had reg X-rays in June- showed nothing, CT in late Aug showed lesions, F18 PET Bone scan still wasn't sure
So biopsy was done 9/19- got the results a few days later.
I saw my rad onc yesterday, I see my med onc tomorrow. I will know my ER treatment plan tomorrow.
I feel better since I have a plan, albeit just the beginning, and reading about how long some of you have survived with good quality life is very comforting.
I still work but I am taking the month of rads off ( with pay, thank you great job!)
They changed my very poor pain control with Zohydro, Tramadol, Advil and Tylenol to Dilaudid, and it's helping, still need more but it's a start.
I see the mo tomorrow and will discuss pain. RO said rads will help pain after a week or more.
In the mean while, I am thankful to a wonderful dedicated dh (colon cancer and AAA survivor)
Oh, I am and RN and the facilitator of our huge Tri-County breast cancer support group in the Villages too.
Thanks for welcoming me! I need you guys!
Cat
0 -
Random question - Would a standard PET/CT from the base of the skull down show the lower jaw? Had a recent PET with nothing mentioned in that area. Concerned about a sclerotic area on my jaw that the oral surgeon saw on a cone beam CT for non-cancer issue. Surgeon was not concerned about because he said dark areas are concerning not light ones. However, I have a history of a sclerotic lesion on my femur. He is currently out of town, and I am extremely worried. Any advice is greatly appreciated.
0 -
CJRT - The PET/CT's can show the jaw. However, mine get all screwed up because of dental work. You can get the scan images yourself and look at them if you have a little computer savviness. Your onc should have access to the images and could check them during an appointment. That way you can check and see if that area was reviewed. If it was and the radiologist said nothing, you are likely fine.
>Z<
0 -
Kaption - good thing you Onc is cautious. Good luck with your PET scan!
Gracie - I hope you can draw strength from us. We all need it once in a while.
Cat - a warm welcome to you on this thread. Good luck with rads and tx.
My CT scan is tomorrow morning at 6:00 am! Way to early for me. Bone scan results seem to show progression and possible new fractures to some existing mets plus a new met on sacrum with possible fracture as well. To be confirmed/clarified with CT tomorrow.
0 -
Oh Linda, I'm so sorry to hear about your bone scan results. My thoughts and prayers are with you.
0 -
Gracie, I pray that you will have the strength you need...both you AND ME!
I was just Dx'd w/Stage IV right from the gate in April. Bone mets in ribs, pelvis, hips, and all up and down my spine (with compression fractures and spinal cord compression to boot) AND multiple mets in liver, pancreas, bladder, adrenals, etc.
I hear U when U say it's hard to stay positive. My back hurts all the time. Had to go off Norco (hydrocodone) cuz it jacked my liver numbers thru the roof. So now I use creams, balms and medical cannabis to knock the pain down just a tad. I'm EXHAUSTED from the fatigue all the time, and I'm probably suffering from depression because even tho I'm on disability and could be doing other things (like just going to the park and enjoying the trees changing color), I don't really feel like doing anything. It took me DAYS just to put up my autumn decorations, and I only put up the bare minimum.
This disease is pretty much a full time job. Heck, I spent all morning waiting in line to get my blood work done (everybody and their grandmother was at the clinic for some reason today) only to stand in line again so I could get my flu shot. Then it's off to get the Rx for my next cycle of Xeloda...geez! I really shouldn't complain...at least I don't have the dry heaves and barfing that accompanies IV chemo, and I still have most of my hair, but that could indeed change once Xeloda stops working and they have to put me on something else.
I'm just trying to take it one day at a time and not project myself too far into a painful, miserable future, but it's hard. I have dark, anxious days, too.
Once again, praying for all of us.
Lita
0
