Bone Mets Thread
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Once again the discussion provided me with great info. Monday morning I will be on the phone to my eye doctor.
My eyes are dry, tired .random floaters. etc and I’ve been avoiding “another” doctor...it seems to be counterintuitive but I just keep putting it off and it’s now over 2years. Thanks for this important discussion.
Herceptin and mo on Monday. Will move up to 2 Tykerb . Take care all
Maire0 -
PET showed that both my subpectoral nodal mass, and my L2 mass have both doubled in size. On Monday I start halavan. I’m playing it down to my kids, I haven’t acknowledged failure of my first treatment. They don’t seem to be handling any of this well. Please tell me what you can about halavan.
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I hope Halavan does a really good job at shrinking those spots! Hugs!!
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Lindalou,
The orbs are the lenses, right? I got a bit concerned at first.
Jennifer
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Yes the lenses! Sorry for the confusion. On the MRI I must say it looks very weird.
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Hi Swess,
I don’t know anything about havalen but I wanted to wish well and lots of luck with your new TX....
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Thank you Gracie and Mia. I’ve really been struggling today. I think it’s set in that my first line of treatment failed, and I’m trying hard to not go into the deep recesses of depression. I have to be strong for my children and don’t want them to know how hard this is for me.
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Laka, the best doctors are not put off by second opinions. Those who balk at them are, IMO, insecure and/or have ego issues. A really good doc will welcome input on your case, especially if he or she is a general onc and the second opinion you get is from a major medical center where they have oncs who specialize in bc/mbc. Being open to a second opinion demonstrates that an onc has your best interests, including your peace of mind about his or her recommendations, at heart. If an onc makes you feel uncomfortable about seeking a second opinion, to me that's a big red flag re. insecurity
Swess, good luck with halavan. Hopefully it will turn things around for you quickly.
Interesting conversation and information on eye issues. I'm on Xeloda, and sometimes it feels like my eyes just don't want to focus, and my readers only make it worse, like they're the wrong prescription all of a sudden. So frustrating what our meds can do to us, along with their benefit
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I completely understand the dread you’re experiencing. I’m waiting to find out the results of a pet scan i took last week, and I too might have to change TX and move on to xeloda.
Although it’s hard, try to stay calm and positive, as worrying will only add stress. I truly hated and resisted taking Afinitor, but in truth the SE have been tolerable so far. But has Afinitor been efficacious in holding the fort? That remains to be seen...
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Swess - I know how you feel. I am in about the same situation. FWIW, I don't succeed to be consistently strong for my daughters 11 and 14. Seems to work okay.
Hugs.
>Z<
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Add my name to vitriol detachment about 5 years ago, in between orig dx and metastasis. Flashes of light, swirling floaters, etc. Detachment tore a vein and retina, which made sight like looking through dirty Vaseline. They tacked back the retina but it ultimately detached and I had to have surgery and a gas bubble to pressure the retina back into place. All the trauma caused loss of about a quarter of my vision in that eye, and ultimately a cataract. Actually, after everything else, the cataract surgery was easy.
Oh, Swess, so sorry to hear your news. I'm waiting for results myself. During the bone scan, the tech had me turn my head to the right which put the computer screens with me on them in my line of sight. One screen showed a dark mass with a big bright spot right in the middle. I thought, well, that doesn't look good. I'm telling myself that if it is progression, that just means the drug combo isn't a fit and the next one will knock the buggers into submission. So hopefully halaven is the key for you. I believe there is a thread dedicated to it. Thinking of you, dear one.
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Swess, check the tread for people with liver problems. Some of them use Havalen.
luck with the new treatment Elena
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thank you for the useful and detailed information Gumdoctor, my eyes are dry and been feeling very weird lately. I knew something strange was going on...but I would never have guessed it stemmed from estrogen suppression...
I am going to get my eyes checked immediately and see what’s up! thanks again
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Swess - So sorry you must move on from 1st line tx. I have not faced this yet, but my turn will come assuming I live long enough to experience it. I wish I knew more about Halaven for you but I am a newbie to all this. I do not have children so I cannot completely relate. But I do find I have to out on a public face for most everyone around me. I still have to go in to work once in awhile. I used to be the boss so everyone is very concerned. I think they need me to be really strong so cannot show my true feelings AT ALL. I can relate to not being able to be authentic with very many people. I and everyone here wish you the best with upcoming tx change. We will help any way we can to support you thru this.
Warmly, V
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Lindalou - So love your Lindalou story. Isn't it funny how a little moment can turn into a lifelong sweet thing? Also thank you for sweet words about my AMAZING WOMAN mother. When I was younger, I hoped to be more like her. Now, learning this new, shorter focus on time (what's in front of me instead of lon-term goals), I see that is not likely to happen. I will have to learn to be content with who I am now and not be so concerned about improving on who I am. This is likely no longer an option for me. Not being negative, just hooing to be more realistic...
Booboo1 - Loved your name story too. My mom had pre-eclampsyia when I was born. Her best friend officially named me and when Mom was better, she hated my newly assigned legal name. She nicknamed me Candy because I was "so sweet." That name stuck ever since but I do not use it professionally...not such a good name for a dental specialist...
Warmly, V
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Jaylea and Blainejennifer - Congratulations on making it thru your harrowing eye experiences. You have been through alot!!!! I read about the retinal detachment and/or retinal hemorrhage potential SEs of the vitreous detachment. I am still really surprised about not learning about this as possible SEs before now.
As a patient safety professional and healthcare provider, I am very committed to providing patient education to improve outcomes. Now as an oncology patient, I am just very disenchanted that this has not been a priority, at all, for the oncology team(s) I have been treated by. Very very disappointing.
This also gives me a place to focus my efforts...I am not comfortable walking away from patient care completely. The void I experience now, in my life and in my heart, IS SO HUGE.
I hope to continue to figure this out...how to balance what I need with what I can and cannot do...
I am very grateful for all of you here.
Warmly, V
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Swess I am on Halaven. Its a good chemo. There is a Halaven thread so come and say hi to is over there.
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Not in humans yet, but something to keep an eye on ...
Antibody reduces bone metastases '100-fold'
>Z<
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Thanks for the information about eyes. Now I know why mine are dry, itchy and blurry. I have to force myself not to rub them. I also need to use Xalatan drops for glaucoma, which is no big deal but it doesn't help.
Swess.....Good luck with your new treatment. I can understand your worry and I hope it goes well for you. Keep in touch with us xx
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I found the cataract surgery had an easy recovery. They did mine at the same time as surgery for a retinal wrinkle in one eye. It was six months before de novo Dx. Hmmmm
Dry eye has been noticeable. When Doing computer work I needed eye drops throughout the day. I also used the gel/ thick drops at night or when i didnt need to see well. Available OTC. They helped! At higher elevations it’s worse.
LAst checkup my labs came back better than any time since Dx 2.5 years ago. The only thing I do differently is have a half dropper of 20/1 CBD on a Ritz cracker before bed. No buzz!
Sleeping well without the Lorazepam, too. I really needed that at first but the anxiety seems manageable now. (Even though I’m heading back for more skin biopsies, expecting more melanoma, and continue to have weird headaches.) Unfortunately this truly is normal now. Thinking of you all and Hating cancer a lot
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These steroids are awful! At least I think that's what's causing this. I am so nauseous, I always eat something before I take them but I'm yucky anyway. I haven't slept in two days
I have a biopsy Thursday, more rads Thursday afternoon, PET scan Friday morning, my first shot of Xgeva after that and rads again in the afternoon. *sigh* At least we're doing something, it gives me something to focus on. My poor dad cries every time I talk to him, I'm trying to down play it a little to him, but I don't want to flat out lie. All of this is just.....uugg!!!
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The whole thing is awful. A to Z.
Z
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BigPeaches.... what a huge load of stress you're carrying with the rads as well as the scan and biopsy as well as the xgeva shot coming up. This is a lot to handle. Sending hugs xxx
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Z, thanks for sharing that article. Interesting and very promising. Dr. Kang is a speaker at a bone biology conference my employer is organizing this June in Utah. Was hoping that I'd be assigned to work that conference, but no.
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Great study, Z!!
The Notch/Jagged antibody (15D11) has already been humanized and Amgen can start a trial if they decide to- apparently nothing much in the way of side effects either- in combination with chemo the antibody is far more effective on bone mets than either chemo or antibody alone...
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Thanks Z and Cure-ious for the information about new hope for bone mets. I appreciate every little bit of encouraging news.
Leapfrog-I was at the optometrist yesterday. We have so many stupid side effects that I didn't even remember how my eyes are usually red and often itchy now but he observed it and gave me these "OCuSOFT Lid Scrub" Wipes. They are for your eyelids. I tried them last night and they were very soothing. You just rub your eyelids and then rinse with water. He said if I use them regularly they should help.
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Tennille76- can you post a link? I've seen a couple halaven, day 1, but want to make sure I'm in the right place :
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Hi I'm almost a year in since I started treatment -- I go to bed with aches and wake up with aches and ibuprofen went from a couple times a week 2 months ago and now it is every day. My question is about exercise -- I usually walk until it hurts. Yesterday I almost did a mile. If I do too much I'm in bed the whole next day -- so I limit myself.
Do any of you know...
1. Should I be exercising and pushing past the pain in order to keep getting stronger -- or is this pointless/harmful?
2. Is it even possible to get stronger?
3. Is stiffening normal -- if I sit or lay down it hurts to get back up and I am all hunched over and pigeon toed for a minute. This is getting progressively more and more. Is there a way to help this -- or do I just have to accept it?
(I've never been an athlete I've always enjoyed walking and yoga -- the stretchy relaxing type! But I worry about being home laying around so much more so than before. Also, I have a my first big trip coming up and there will be lots of walking and I want to keep up with my other half. On Kisqali I was considering renting a scooter my fatigue was so bad -- now that I'm off that and just one round in on Ibrance, I'm clear headed and have energy -- it is just the stupid pain that is increasing.)
Thanks!
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TinyTurtle - I don’t have any advice but wanted to say thank you for sharing that Kisqali made you so fatigued. I’ve been on it for nearly a year, and just walking around a store would absolutely exhaust me. The fatigue was awful... and no one seemed to understand. I thought I was crazy! I’ve been off now since Friday, as I’ve unfortunately had progression, so I’m hoping somewhat normal energy levels will return.
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Tinyturtle, is the pain bone mets pain, or just joint/muscle pain? You shouldn't push through met pain, but you can gently increase the duration of exercise if it's muscle pain or letrozole induced joint pain.
Your instinct to try to move more is a good one. The stiffness you described looks like a classic letrozole side effect, and my MO stressed that the less you move the worse it gets. Now, of course it's easier said than done especially when everything hurts, but you're on the right track. Build up slowly, stretch thoroughly, maybe try rolling tight muscles on a foam roller if you can do so safely
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