Bone Mets Thread
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Lynn - excellent news! Yay! Thank you so much for visiting Carol and giving us an update. She must have been so happy to see you. They have to find a way to give her relief!
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Lynne- such great news about your DH Happy dance time!!!!!!! Thanks for letting us know about Carol-praying for her to get relief and soon!!!!!
Momall-yes, I had one Gezmar treatment last week-next one is Thursday night!
Babs
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Mom - good to see you back in force. I am so thrilled that your comfort level with exercise is rising. With bone mets I would be very careful to stick to the simple movements and avoid activities with a risk of falling. Yoga, which I love, could cause problems and I am not sure skiing would top my list, but Dani seems determined to have a life and I believe her attitude largely explains her remarkable progress.
>Z<
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dear artist, why oh why is this such a lonley disease when so many are touched by it? I just had emerengcy brain surgery because that darn tumor grew and blacked out my whole frontal lobe.you can see how people react and. i seem to be ok now. lita i wish i was in my flower beds too i also lost my lovely L.B. rose 2 winters backunder my window next to my mr lincoln....heavenly oh i miss my summer smells but the licics are almost ready to be brought in by the armload...:).
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To all knowledgeable ladies, I have a question:
Could IDC possibly turns into ILC? I had CT and Bone scans last week, the bone mets remain stable, but radiologist reading the CT indicated there is abnormal but subtle thickening of the peritoneum (Gerota's Fascia). After some explanations, the Radiologist concluded " All findings are consistent with peritoneal and retroperitoneal tumor spread. There is no mass foming lesion however. This is typical for lobular breast cancer spread." I had 100% ER+ IDC when diagnosed and had left mastectomy.
Had biopsy yesterday, have not seen path report, and I will not be able to meet with my Onc until Thursday next week. With my limited medical knowledge, I could understand that ER can change from positive to negative, but IDC to ILC?
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May 5, 2017
Your Q's are way over my head--I'm just another MBC woman! My own quarterly CT scans are "stable" but my CA 27-29 keeps inching North--was 80.3 last month. Have you had this test?
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Cling, it doesn't turn into or change from IDC to ILC, but it is not at all uncommon to have both types of bc at the same time (I did). If this new area is ILC, it was probably somewhere in your breast from the get-go -- either too small at the time to show up on imaging, or mixed in with your IDC and missed in pathology. If you haven't already, you might want to go back to that original pathology, and see if there's any mention of it. Sometimes things like that get by us, and it's not until we've learned a lot more that we can go back and pick stuff out we missed earlier.
MomATT, so good to see you back posting, and glad that Dani continues to do well with her tx. What meds is she on now? I'm also a big fan of turmeric or actually curcumin, the active component in turmeric. Not sure how much it fights our kind of cancer, but it makes a noticeable difference in my joint pain. Also, you do have to be careful about taking it with some chemos. Here's good info from MSK: https://www.mskcc.org/cancer-care/integrative-medi...
Lynne, great news about your hubby's clean scan! And I am so glad you were able to visit with Carol and share our love and concern.
Damon, welcome. Yes, we all watch our CA27-29. Inching up probably isn't a concern, especially with stable scans. And with scans that frequently, your onc should be on top of any changes. Giving us more info' on your history, dx and meds -- something you can add to your profile page -- also helps us respond a bit more specifically.
I got some happy news this a.m. CA27-29 dropped from 785 last month to 386 yesterday! ALT & AST also fell back into normal range after some scary numbers last month. I'm HUGELY relieved!
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RE tumeric...my MO said DO NOT TAKE IT during chemo cycles. OK to take on off cycle weeks. Don't want it to compete with chemo in the liver pathways.
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wonderful news, Deanna!! Happy dance for sure!
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Deanna. That is great news. Happy dance as Kaption says is definitely in order!
Bab
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Marvelous news Deanna!
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HI all, I've fallen very far behind and had to read many pages to catch up. So many ups and downs for all. I think of everyone in my nightly prayers and I'm relieved to see in the most recent pages some good news for many.
Z - it was interesting to see your question about indications of bone met size on scans. I don't get this on my scans but have often wondered why.
Cling, about IDC becoming ILC, in my initial path report after my mx, my tumor had both and the MO just said it's part of the same process. I'm with Deanna in her explanation.
I was thinking about everyone here this morning when I was at the beach taking a walk and meditating on life. There was a warm breeze, bright sunshine and blue water. So tranquil. I should have taken a picture but it's kind of my "church" and it just didn't feel right. Next time I go, I'll think to do that.
I'm waiting on monthly TMs to come in this week but am expecting they will continue to fall slightly from the Ibrance and Letrozole combo. I've started swimming again and all of my constant body aches are gone (expect for my right foot which has a nasty case of plantar fasciatus going on).
(hugs) all around - xoxo
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Hi Jen - Nice to hear from you. glad things are well. I am sure your tumor markers will be unremarkable.
>KNC<
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Deanna, great news for you! That's a HUGE drop!
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WOOHOO, Deanna. Thank you for sharing your good news.
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Deanna wow that's just gr8 news! You went through the ringer, it's about time you hear good stuff. Thx so much about the Tumeric, I've heard about a lot of ladies taking it, and how wonderful it is. D's attitude is a bit like if she takes something like this she is acknowledging that there might be a problem, and she doesn't want it to be. Yep. But..
Lita aha, definitely will check with MO. Thanks doll. How are you today?
Zar - i am baaack! (i hope) - lol at the thought of D overdoing it. But she feels so much better now that she actually does something even minimal with the kids as oppose to only sit at the sidelines.
Jen so cute your "church" - good for you sweetie.
Cling a lot is possible, as Deanna said.
LindaE holding on??
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Mommal - you're so sweet! Yes, holding on thanks to all of you! Swallowing an arsenal of pain meds but they seem to do the trick.
Question for all: Has anyone taken Decadron (dexamethasone)? Did it stimulate your appetite? I am sooo hungry all the time I could eat a horse!
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Deanna - sounds like a classic flare reaction. TM's are a challenging diagnostic tool to interpret. Glad you are doing well.
>Z<
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Deanna, that is such great news!
Linda, oh yes, it causes increased appetite, sweating/flushing and insomnia too. I had a psychotic reaction to it and can never take it again. It was so scary. Almost drove my car into a train! So no Dex for me. Hope it does wonders for you.
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so no problem taking curcumin with femera and Xgeva right
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MomATT, thanks for asking...I was able to go grocery shopping all by myself - no scooter either - with not too much pain today! That's a big victory compared to where I was 3 wks ago before the additional rads. (I just hope it lasts for a while...)
So happy to hear others' victories as well. May we all head into summer with even more victories...or at least hold Mr. Cancer in check.
Hugs to all,
Lita
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Linda dear, from the experience that i have with Decadron, it's kinda an unknown substance. It works on everyone else in dif ways. A lof of gals on the Brain mets thread had to take it. D herself hates it. It could either make you sleepy or not let you sleep, then ppl work it out to have at different schedule. Food is the same, either ppl lose the appetite or is very hungry. I don't know what dosage they gave you, but if it's much, and no driving into a train as Lindalou mentioned,(I can't imagine what scare that was), you could ask to lower it a bit. Hoping for the best for you.
Lita so glad for you.!! We need you sending us these beautiful pictures.
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Deanna, congratulations on your drop on TM, ALT & AST. Those are such good news! I think you are right, the original path result showed my tumor as "IDC with lobular features". I googled in 2010, could not find any info or explanation then, so I always thought myself as IDC. Well 7 years have made some differences in google data, not only I found your post in 2010 on both IDC and ILC, I also found a thread on BOC posted starting on 2/2017 specific on "IDC with lobular features" (not on stage 4)and cited some research materials out of U of Michigan. Thanks for your response. I will just patiently wait to see my biopsy report and meet with my Onc.
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Gracie, I have seen comments in the Ibrance FB group that some oncs do not want patients using turmeric or curcumin while on Ibrance. I don't think there's any research or real evidence either way, but you may want to at least ask your onc how he/she feels before deciding.
Lindalou, ohmygosh -- what a frightening thing to have happen! Wow. I'm so glad you didn't do that! And LindaE, yes, I remember when I had TC chemo and got Decadron I was full of energy (like wanting to clean the house at midnight energy) and extremely hungry -- until it wore off, at which point the let down was equally weird.
Lita, grocery shopping without a scooter sounds like a huge improvement! So glad to hear it! I just hope you don't overdo it now that you're feeling so much better.
cling, the path from my original biopsy had the same wording -- "Ductal with lobular features." But when I had my first surgery, a lumpectomy, it proved to be two lesions side-by-side -- one ductal and one lobular. UCLA later found smaller lobular hiding out elsewhere my first surgeon had totally missed, necessitating a mx. That's why I was pretty sure you had lobular somewhere from the start, and also why I am so keen on second opinions!
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I'm happy to see that most of the news tonight is Good! Yea Deanna on the Tm's!
Linda glad to hear that headache has subsided. I hope it's the beginning of whatever is going on resolving itself and you solve the mystery soon.
Lita, Shopping upright is huge. I hope the rads have kicked in for the glorious summer and clear up any trouble makers.
Glad to see you back Mom and hear Dani is moving along OK. Like her I insisted on skiing and hope it's not my last time. It's such a big part of my life. There is nothing like the pure rush of swooshing down that hill.
Jen swimming sounds glorious. Our pool will open soon and the weather is heating up. I look forward to sun and water.
Lynne, I'm so glad for your Dh and you. Here's to a LONG stretch of unremarkable news!
caption, Super duper Happy Dance! Great news for you and therefore us all!
Nan, That sounds so scary, I am so glad you are doing OK....
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I will check with my onc. I've been using the curcumin to help with muscle soreness from exercising. I don't take ibrance, only femera and XGeva but I will check with my onc
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Thanks for your responses regarding Decadron. Other than a super big appetite, I have bouts of energy where I can move the whole house around and then drop and have a nap. The house is clean these days I can tell you that much lol! I'll stay away from trains... I'm on a 4mg dosage 3 times a day.
Edited to say that I checked with Onc and pharmacist for Turmeric and has been cleared by both.
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Hi!
I'm pretty new hear and can't always figure out who is who on these posts. But, I am so happy to read your stories.
Was supposed to have a bone marrow biopsy yesterday. I was in the hospital with a nurse going through health questions when I found out you can't take nsaids for the five days before the biopsy. I practically got on my knees and begged for the biopsy. The nurse talked to the doctor but he refused.
Then, the nurse starts lecturing me on how I must take baking soda, stop all sugar and gluten and meat to keep my cancer away. Now, a lot of people have given me this same advice and I guess she was trying to be helpful. But, I found the whole experience humiliating. I am open to hearing what other cancer survivors are doing with their diet and very aware that a healthy diet is important.
But why this medical professional was telling me about stuff she found on the internet is beyond me and made me feel she was blaming me for my cancer.
So, my SIL took me out to lunch and I had two margaritas
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Linda how is your swollen tongue? I don't remember seeing that it had been resolved. Is that why you are taking steroids? I may ask my MO for a short time prescription, because when I've been on a short course of them, I'm like you, I get everything done. Recently just been too tired to do anything but the most basic of tasks.
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Cive, Tongue is still swollen and even worse this week. Steroids (Decadron) are not helping the swelling but is helping the horrible headaches I've been having. MO suspects brain mets at this point or compression of a cranial nerve from bone mets in the cervical spine. Why did you use Decadron in the past?
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