Bone Mets Thread
Comments
-
Great picture Susan. You both look very young. Now, what or why is a tomato throwing contest?
0 -
Hope, Susan - Love the pics! You people look good!
Cathy - Such great news! Awesome.
3-11-2011 - Woohoo - shrinking sounds darn good. Sorry about the SEs though.
Xavo - No, I haven't looked at the previous reports yet, I'm away for a few days and we don't have online reports here. Will be home on Wednesday.
Terre - Nice to see you! Hope you're doing well.
And to all, have a nice evening and week-end! Hugs to all.
0 -
Just want to thank you all for your input on the CT scan to see bones. I had the scan this morning ( after taking 2 Xanax). I have a number that I am not supposed to have, where you can call and listen to the dictated report of your scan. The report shows no mets in any organs, thank you God. The only thing that the report says about my bones is that there is diffuse osseous Mets.....which I already know. How then will my onc be able to tell I if the bones have improved? Will she comparethe scans herself physically? Sorry if this is a dumb question, there is still much learning tocome for me.
0 -
Lynn, I think the radiologist do the reporting and diagnosing on the tests. I always wanted to talk to them, cause they give my onc the info he gives me. But they won't let me...go figure.
Dunes, Chicago has been doing a tomatoe throw for a couple of years. You have to pay, and the money goes to a food bank.
Want to do bubble soccer next...look it up on u tube. It's hysterical
0 -
Hello everyone,
Romansma, what a great picture of you and your son. I'm so happy you got to share that experience with him. I am going to see Shania Twain in October with my youngest daughter, she's a huge fan and I cant wait.
mscal02, I hear ya on the epsom salt baths, my absolute favorite thing to do when I'm in alot of pain.
Cathy, how exciting that your daughter is engaged and it sounds like you're fond of her fiancé. That is something really special to look forward to.
Caryn, how's the area feeling now where they did the skin biopsy? I hope it's better and glad to hear the dermatologist is certain this is treatable. It's probably already been taken care of with the area that was excised.
3-16-2011, nice to hear from you, sorry that you're still in pain but glad your last scan shows things are shrinking.
Susan3, you and your daughter could pass for sisters, great picture and a tomato throw sounds like fun!
Lynnwood, great news that your organs are clear. I'm sure your mo will be doing a comparison to see if things appear to be healing. At my cancer centre the radiologist looks at it and reports it to my mo, however after a ct scan my follow up is with the radiologist himself.
Hope everyone is enjoying the weekend, it was stinking hot here yesterday and I didn't feel the greatest but got out for a nice leisurely day with my eldest daughter. Lunch, retail therapy and we even went and did a beer tasting, of course she did most of the drinking. Came back with a strawberry rhubarb beer, very interesting.
Hugs to all, Annie
0 -
Annie, so cool you meet the rad guy. I don't. Had the same one for 14 years, my onc likes who he likes. So it's great it's the same guy.
That's what all us girls need to know, important I think for the same rad to read your reports .
Happy Sunday
0 -
Thank ladies yes we are cheerful and that is wonderful.
Love to you all,
Cathy
0 -
Happy Sunday to all,
I never asked to see radiologist, it's always a different one. Will bring it up. On one occasion, when I questionned the reports - my Onc spoke directly with radiologist on the phone while I was there. I will try this again next time. I really need to get these "surprise mets" sorted out. But I do have great news that I forgot to mention, I got a new nurse navigator and she's excellent. Told my Onc I was going to file a complaint with the Onc department social worker, and voilà! She said no need to create friction, I will change you now. Yes! The other one would not respond and sometimes a week later, another one would follow up. Not very efficient, especially when it's for pain meds.
Strawberry rhubarb beer? Never heard of it. Is it good?
Lynn - that sounds like excellent news! My understanding, at least here, is that the dictated report is mainly the conclusion/summary. The written report is much more specific. But lucky you to have that number. I think I would have done the same. Keep us posted!
0 -
Annieoakley,
Thank you for asking. Yes, the dermatologist feels that the excision and electro desiccation (ah, the smell of burning flesh) will be all the tx needed. She was 99% certain it was just basal cell, but being a cancer "pro", I am going to be on pins and needles until the path report is in. It feels much better than the first day, but is still a bit raw and quite ugly. It is a dime sized area which I have to keep covered for a week.
Somewhere, long ago, I mentioned that younger dd is fascinated by medical procedures. By coincidence, she had the day off and accompanied me to my mo appointment so she was there when it was decided that I needed to see a dermatologist. After lunch she went with me to the derm and was very pleased to have a birds eye view of the whole procedure 😜. She cracks me up, but is and has been the best second set of ears to have when it comes to medical stuff.
0 -
Hi All,
I got to speak to my radiologist because I had a reaction to the MRI contrast and he came into the room rather quickly! He was pretty concerned. From there I asked him about my scans and of course he said only my onc could give me the report. I did get to see the images though since I was being pumped with Benadryl and they needed me to stay put. Now I ask for him but he isn't always the radiologist reading that day. I did ask to meet my dosimetrist when I had radiation. She was thrilled to meet me and we had a great conversation. She said she only had one other patient ever ask to see her.
Good Sunday to everyone......
0 -
I questioned the reading of my scans because I have ILC and it can look very different on scans. Mostly, it is completely missed. My MO told me she is sure to indicate the ILC on each order so that the RO knows. However, after my questioning this last week, she has a meeting scheduled with the RO to review my scans again. I guess it never hurts to ask
0 -
Hope, I also have ILC but did not know that it can look different on scans! See the things I learn here! My onc does not write ILC on the script but I will make sure she does from now on. She writes metastatic adenocarcinoma. Loved the picture of you and your son! My son loves " the dragons" and just took his girlfriend to see them in Philadelphia not long ago. What a great picture and a great memory to make with your son.
0 -
Hi Ladies,
I'm home. I cannot believe the amount of information and updates I missed these past two weeks, but I have to say, two weeks in the deep woods without internet or phone has been heavenly! Sorry to hear about the scuff-up a few pages back. Caryn I hope you continue to update us with your ever-present-upbeat-experiences. I know how much I benefit from hearing positive news when inherently we're all just a scan or exam away from devastation.
I may have picked up a batch of poison ivy, unfortunately on my LE arm, so will be monitoring and using OTC cream to contain the spread.
I love the photos being shared, especially family photos. It helps to make our relationships a little more real when we see faces and personalities rather than just names.
Well, now back to over 400 emails. I wonder if we can ever go back to pre-internet days. I don't think so.
Amy
0 -
HI all, Is anyone here on letrozole (generic form of Femara) and Faslodex?
0 -
good afternoon ladies. Hope all is well. Still paying for doing so much Friday. But worth every minute of it. Thank God for pain pills but I am building up quite a resistance. In the beginning one diladid 4 mg for break thru pain would kill the pain and knock me out. Now 5 in an hour ( Dr approved ) brings my pain down to an 8 and can still function fine. Calling mo tomorrow. Hoping they increase my long acting pain meds morohine sulfate er instead of more diladid. Surely that much can't be good on my tummy issues.
Hugs all around
0 -
Aoibheann,
I'm on Letrozole - aka Femara and have been since July 2013. What would you like to know? It's treated me well so far, although I was having daily, almost hourly hot flashes those have virtually disappeared. I also get a monthly xgeva shot so don't know if bone pain is from that or the Femara. It's not debilitating, but some days I feel many years older than my age. Initially I was taking it at night but seemed like I was having insomnia so switched to taking it in the morning. Otherwise, fingers crossed, it's kept me dancing with NED for 2 years now.
Amy
0 -
Aoibheaan,
I have been on Letrozole for 13 months (Arimidex before that for over 2 1/2 years). Any specific questions or just general thoughts?
Caryn
0 -
I've been on Letrozole since Feb 2013. Happy to answer any questions or provide general thoughts.
0 -
I was on Femara my first go round with cancer in 2008. At that time, there was no generic. When Letrozole became available, I have found it much easier to tolerate then Femara. It has been suggested that although the main medicine is the same, the "fillers" used in generics can make someone notice a difference in side effects.i can totally tell the aches from Letrozole from the aches from my bone mets. I have been tolerating it very well
0 -
I read Aoibheann's question as is anyone using Letrozole with Faslodex. If that is what is being asked, Chris asked a similar question recently about using two AI's at the same time. Many people questioned 2 AI's at the same time. I wonder if you could send a question about this to the nurse at Johns Hopkins who answers bc related questions.
0 -
LOL, music lover! We're all good readers, aren't we😜?0
-
AmyQ, welcome back and glad you enjoyed your time away! Will we ever go back to pre-internet days? I don't think so and I have to say we just had a 5 hour power outage and I was going crazy not being able to get online. I hope you get the poison ivy under control.
Aoibheann, regarding letrozole and faslodex, I remember my onc talking about this and they do use them together, although technically I believe faslodex also known as fulvestrant is considered an estrogen receptor downregulator. Basically performs the same function as an aromatase inhibitor but in a different manner. Used together they can be very effective against metastatic breast cancer.
Patty, sorry about your pain and that you're building up a resistance to the pain meds, get some rest because you have done alot since getting home from the hospital.
Caryn, glad to hear it's feeling better, and yes the smell of burning flesh is not pleasant at all. I had a total of 9 moles removed in one day and after excising them they burnt them with something and I was a little disturbed by that smell. Sending positive thoughts for all good news.
Hugs to all, Annie
0 -
I was on Letrazole and Faslodex for a while after I finished chemo... Maybe three or four months. I had a lot of aches and pains, which ONV said was from the Letrazole,so ONC switched me to exemestane, which is basically the same type of AI as Letrazole. On that combo I remained NED for three years with zero SEs.
0 -
Stefajoy, wow that's awesome that you got three years out of that combo. Especially with zero side effects! I think they can add faslodex to any of the AI'S, I saw an article about arimidex and faslodex being very successful together. I am currently on letrozole and I have alot of aches and pains, feel like I'm 90.
0 -
Hope my mother isn't watching from heaven and seeing that I can't read!
0 -
Annie, ask your ONC about exemestane as an alternative. A lot, I mean all, of my aches went away after I switched, and still got three years after the switch.
Currently not in NED standing. Put back on Letrazole but this time with Ibrance. Three months, very mild joint aches came back, but not too bad.
0 -
I have had joint aches and general body stiffness on both Arimidex and Femara. I've tried glucosamine/chondroitin,curcumin and boswellia for pain relief without success. The best thing I found is simply to keep moving. Of course,one can't be moving all the time.😊0
-
ladies I need advise!! I am currently on a three drug combo chemo, one can affect the heart after you have had over a certain amount so I have heart scans after each treatment, I have completed 4 with 2 more to go. I had my scsn yesterday morning for Wednesday treatment, Dr just emailed me and my heart scan results show weakness in heart, last scan I was at 64% now 57%. If I get below 50% I'm at risk for clinical heart failure. He is willing to be aggressive and continue since my tumors gave shrunk dramatically (I guess he can tell from feeling them). I don't know how to make this decision. If I decline he has to come up with new combination of chemo, I emailed him back asking "if I decline why can't I just have the other two drugs for last two treatments". I really don't want to make this decision. Just wanted to vent.....I fucking hate cancer!!!!!!!! 😕 any advice????? The drugs I am getting are Taxotere and A/C. THE A "red devil " is the one in question. HELP!!! Thank you!
0 -
Kate1974, sorry I don't have any advice beyond maybe get an appointment to go chat face to face. My onc also warned me about the effects of the rubicins on your heart, but I was fit (and not healthy) when I started chemo & took it very very easy & she didn't do any heart scans. Do you have a predisposition towards heart problems? The way I approached chemo was to throw everything at it, so gut feel is to agree with your onc.
Hope - so glad you got to share that experience with your son! Radioactive by Imagine Dragons was playing on the radio as I drove home from my bone scan in December - thought that was very serendipitous as it I had to laugh despite the awful report!
Cathy - congrats to your daughter & sending all positive energy that she comes home from her honeymoon with your grandchild on board ;-)
3-16-2011 - so jealous you're going to Taylor Swift. My sister & I have decided we'll take my little one if Taylor adds South Africa to her tour schedule.
Susan3 - awesome photo! looks like you had loads of fun
AmyQ - welcome back! I'm sure you had a wonderful time & hope the poison ivy doesn't cause too many problems
Have a great week everyone!
0 -
Kara, their live version of Radioactive was incredible!
Kate, wow, that's a tough combo you are on. It's usually reserved for curative early stage treatment. I see you are Her2 positive. Have you already done herceptin and perjeta?
I'd be leaning towards preserving as much heart function as possible. Might be time for a 2nd opinion, pronto?
0
