Bone Mets Thread
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Ken-- if you posted prematurely, please know we would rejoice with you for good news. Praying for another explanation for your wife's pain.
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Ken, yes, we would be so happy! Let us know as we will be thinking of you. Bluefrog, nice pic, lookin' good sister!
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Aurora holding your hand! Aghh the wait!
LindaE that is so frustrating. They know that these txs help and could save lives and they don't reach out to make it happen. Unbeliavable. I really hope you could get around it. You should know on the Ibrance thread, almost everyone has either Letrozole or Faslodex. It's a given. So sorry you have to go through this.
Zar you made me chuckle. Love how you ladies get what I am saying. Sounds complicated enough. Love it. I told everyone there about the strength that you ladies give me. They are all scared of you guys! Z I will ask the Rad Onco on Friday what she thinks of ALA. I find it fascinating.
Deanna crossing my fingers and toes for you to get great results! Your words are on target as usual. It means so much to me. Doc is very professional, softish…not soft, I told her about being the "driver" she said we will seat in the same bench! Oh magic to my ears. The problem when they "think" you (I) understand things, they start talking to you (me) in a more professional verbiage, and I have to catch up!! LOL (can't let the guard down!) I do wanna take the opportunity and ask this new Rad Onco about Pet/CT vs Bone scans.Can't wait to get back to all of you about this!
Ken I am sorry but what does it mean "hot spot", was there a SUV #? For sure I would say for you to get a copy of the report and the CD. In the report you could see for yourself what is says in "Findings" that should help you understand. Good luck. You have a lovely family.
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I don't have the pet on a cd but I have read the report and looked at the scan with the MO. The results according to the report are metastatic lesions on her t8, l5, and left side of her sacrum and pelvis.
They also noted potential lesions on one of her ribs on her left side and a spot on her left shoulder bone.
I could clearly see what they were showing in her spine and sacrum/pelvis. The doctors believed that her CT would confirm what they saw based upon her pain and lack of other explanation from x-rays, but the CT did not show cancer. The doctor at Beth Israel told us that an MRI can show better what is going on inside the bone but that they believe it's cancer.
My wife is not one to complain about pain, she recovered from her lumpectomy and reduction and her c-section with just Motrin after leaving the hospital and her pain is really bad right now. They have her using Percocet 5/325 to alleviate the pain and it's working right now.
Her MRI is Saturday morning and we have a follow up with her MO on Wednesday next week.
Ken
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Just weird that if it's not mets then what is it. Why would she have pain then? Sorry, just saying. Also, If I may instead of Percocet, (=constipation) maybe Tramadol (strong aspirin), dilaudid it's good stuff. If you wanna consider. Let's hope for good news. Even a medrol pack maybe for inflamation? You could tell I am not a Percocet friend.
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the doctors believe it's cancer because they have no other explanation for the pain, she's doing well with the percs (doctor also gave her OxyContin 10mgs if the perc 5/325 were not enough)
I know most opiate based pain medications have similar constipation side effects but she seems to be tollerating it well.
When we met with Dr. Come at Beth Israel it was nice to know that he knew her case really well, my wife's MO has frequently called him about the case and our local cancer center presents their cases to the Beth Israel tumor board weekly and he has had prior direct input on her treatment. Makes me feel better about our local cancer center
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MomAtt- I read and then read again your visit with new MO. Praying you connect emotionally with everything and trusting her can take some of the load off of you. You take on so much and do such a great job.
Auroa- I have on my dancing shoes waiting!!
Let My- I am so excited to read the great news every time you post! She's at a great place and they really got things working for her.
Deanna- I never mention you because we do so much talking outside of BCO but I knew you would love the book. I am going to a weekend seminar she's doing in Oct. I don't have computer with me and its so hard to comment on I phone. I love the thread.
Ken- my bone scan coordinates perfectly with my cat scans. Pet scan originally had some things light up that were not cancer on cat scan and never was to this day. I have lots of degenerate disease in my back. Also MRI of my spine in thoratic area only gave weighted signals. Bone scan is what Dana Farber relies on for Boney metastits. Biopsy will confirm area that is bothering her, but like I told you when they decalisfy the bone it looses estrogen etc receptors. I never give up telling anyone second opinion even if your MO is your relative is imperative to get to ( in your case Dana) vs where you are to compare. My pain in my femur was so bad that the cancer had almost ate through the cortisol bone. How are her TM's? Are they reliable?
Blue frog - love your new avatar!
Hugs and prayers to all
Carol
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kennya, I think what you're running into is one of the most frustrating things about getting an mbc dx. Sometimes prior to a biopsy, it's truly impossible to say with 100% certainty that a spot is mbc. I know I found this incredibly frustrating at first, because all the imaging lingo leaves open that little shred of hope that they're wrong. Sometimes they can't give a definitive dx from scans but need to rely on our hx, pain, labs, etc., as well as their dx experience -- at least until they do a biopsy and/or the meds they RX start to work.
As far as pain relief, I couldn't survive without a heating pad in the very beginning, and even now if I overdo things. So do pick one up for your wife if you don't have one, and see if it helps. My fave pain reliever so far has been Tylenol 3, which is acetaminophen with a nice boost of codeine. Others make me queasy or worse. There are also pain patches. I experienced good results with Lidocaine patches (RX'd strength), and Fentanyl is a stronger option. Sometimes a true pain specialist doc can be helpful in sorting out what works best for each individual.
PS ~ Carol, I was writing while you were posting, so just wanted to say, hi, and also comment on Bluefrog's new avatar. Very pretty!
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Chelle so nice to hear from you we were all wondering how you were doing right ladies? I'm so happy that you are all checked out in the uterine area and it all came back clear whew that's a relief eh? This iron deficiency will pass and you will be planting trees on your new property before you know it. Eat your spinach and grass fed beef and we look forward to hearing how you are doing.😊😊😊😊😊😊Wendy
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good afternoon ladies. Trying to stay inside with AC on. Heat index 110 today. Melting ......
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Hi melting Patty.
Deanna - keeping fingers and toes crossed for your upcoming scan.
Aurora - my dancing shoes are ready as well.
Good news! Nurse confirmed that Fas will be provided by the clinical trial.
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Linda- quick ques why are they not offering letrzole with Ibrance first? Either way I love reading that you didn't have progression from another opinion. I love it when we get different opinions. I learned that the most important opinion is the pathologist. I had 2 pathologists look at same results and interrupt it differently.
Just my 2 cents again.
Hugs Carol
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Hi Patty! I melt with joy when you post !
Hugs Carol
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Linda so happy for your good news. Aurora so glad to see you post. I hope your pet shows good news. Party hope you enjoy the ac.
I maybe joining the the ibrance fluvestrant club. I met with my new MO today and she says despite low tumor burden progression requires change in treatment. She is going to see if my hip met can be biopsied. She wants to make sure I am ER positive before starting new meds. I am working on staying positive but it is difficult today. Hoping next treatment can last a long time.
Thinking of you all everyday. Kenney welcome. I do hope there is good news in the future for your family.
Peace
Mary
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Loves - I can't get Ibrance with Letrozole, only for first line tx here.
Mary - I'm sorry. Bugger. Sending you positive vibes and hugs.
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Mary- my bone biopsies were a failure for Er positive. Slides were TN but as it turns out I am Er pos. When they calcify the bone to do biopsy, it can loose the status. I will pm you my pathologist report that addresses this that got a second look at by Dana Farber. I'm on I phone so I will have to copy and paste to get to you. I'm challenged at that from this phone
Hugs Carol
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Melting in Minnesota too !
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sorry for all those melting. After a very hot June, the Pacific northwest has been beautiful highs in 70 and 80s lots of rain and awesome sleeping weather at night.
Just found out my new mets are too risky or too small to biopsy. Plan is to stay the course with afinitor and extemestane for 3 more months than scan again. Nice not to start a new treatment in the summer.
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3-16-2011, I'm curious about " too risky to biopsy." Are they in the spine?
Best wishes for positive responses to your treatment.
And DO enjoy your beautiful weather!!!
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Hey, all: Sorry I've been gone. Finally got married and promised to report back. I actually have blog and detailed a bit of the wedding there. Dating and Marriage with Advanced Cancer: Hope in the Midst of Sadness http://www.curetoday.com/…/hope-in-the-midst-of-cancer-sadn…
And here's an image from the big day. Pretty scary for me since never been married before and scared about what is next with my health, but blocking that fear for now.
Saw several posts about NED earlier. Congrats. It is weird to say congrats for something like that, but it is a big deal.
Susan
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Chelle - I only skimmed after I saw your post about your breakthrough bleeding on tamoxifen, so I'm not sure if anyone specifically answered your question or not. I had unbelievably heavy periods several times before I was put on Zoladex last summer (wasn't on tamoxifen and this was pre-mets diagnosis). Downright scary heavy bleeding. I ended up anemic and weak and tired. The doc had me taking liquid iron (Floradix) because the constipation is less with that than with the pill form. Once the Zoladex kicked in and my periods stopped, I have never had a problem with anemia again. I hope the same thing happens with you! I remember the terrible fatigue as a result of the heavy bleeding. I honestly don't feel much less fatigued now, but it's from the Femara this time, not anemia. It's a bummer when your brain wants to do so much but your body won't let you!
Waving hi to everyone else! I'm wayyyyyy behind on this thread. I'm on a me-only staycation (family is gone to Florida), so am trying to catch up, watch political stuff, just do whatever I want for a few days. Dishes are stacked up, and I don't care! lalalala ;-)
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I had a similar issue because of fibroids. Severe anemia. Got IV iron which helped a ton and then had the fibroids removed and my uterine lining ablated. Nothing since, so thank goodness for that. But they did find pre cancerous cells so I go in for endometrial biopsies every 3 months just to check (know that can be a problem with Tamoxifen, risk of uterine cancer). I figure better safe than sorry.
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I'm sitting here beaming at your photo, Susan! Congratulations, and thank you so much for sharing such uplifting news with us! I'm so happy for you! By the way, Caryn (exbrnxgrl) has a thread on which I hope you will post this exciting news and photo. I'll give you the link, in case it's not one you normally frequent. https://community.breastcancer.org/forum/8/topics/...
I'll catch your blog too to learn more!
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Susan, Congratulations!! Yes, Life does not end with a stage IV diagnosis. Thanks for sharing your happiness with us.
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cling: I'm so glad I found this thread. so nice to talk to folks who are in the same boat but still going on with regular living. :-)
susan
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Susan, Congratulations on your wedding and I wish you many years with your new guy. You look so pretty and nice article in Cure.
Aurora, do you have PET results yet?
Moma, I'm with you on the major migraines. Sure do hate their constant presence.
Mary, staying the course sounds like a good plan, and yes enjoy your summer.
Stilts, Melting here too but the humidity is what is really bad. Just had a severe storm roll through which may cool things down.
Had CT on Tuesday and after consulting with MO and neurosurgeon have decided to keep on current tx. Stable lung fields. Can't do kyphoplasty on T-10 because cement pressure would fracture the already fractured vertebral column. Rods and screws are mostly good with the exception of two which are bothering me. Slight increase in soft tissue mass associated with my third rib mets which have been radiated many times already. So all in all a decent report for me.
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kaption
The net they say is too risky to biopsy is in my spine at C6.
I am enjoying this great weather and will continue. Except when life is interupted with migrain like today agh.
Mary
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Hi everyone, and congratulations to the newly wed Susan! Lindalou, no I haven't gotten my results yet. I am not in the habit of collecting them I rather wait till my doc can explain it all to me, I trust her and from what I read in here in BCO at large I don't want to scare myself silly by trying to interpret the reports myself. In my opinion a week is not going to make a whole lot of difference on any new progression plus I would think my oncologist would call me if there was something urgent, she has been known to do it. I have my appointment with her next Friday next week, I had to rescheduled it from Wednesday because my daughter won't be in town to take me.
Here's hoping everyone is having a relaxed afternoon and as pain free as possible.
Aurora
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Linda I would agree that's a great report love hearing the good news keep on doing what you're doing😊
Susan congratulations on your nuptials I wish you many years of happiness such an exciting time eh?
So I just got the results from my last CT scan , continued shrinkage no new mets the oncologist told me the cancer is not happy and dying I'll take that😉
I want all of our cancer to just melt away that is my wish
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wendy. That is wonderful wonderful new
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