Bone Mets Thread
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Jen! Linda! - awesome news. Glad for the good news this weekend.
>Z<
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Jen. Such great news!!!! Go and enjoy your trip!!!!
Linda glad your progression may be better than you thought!!!!
My dd came home from France today. We met and I told her about my progression. She handled it pretty well between the tears. It breaks my heart for her to have to deal with this with me. I'm blessed. She's a great daughter!
Bab
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Bab,
That's the hardest part- making those you live sad with your news. I'm glad you have her for support.
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hello again from Wales,
I've not posted for a few weeks but felt that I should let you lovely ladies know that I feel better in my head and am starting to digest all of this. I have started on chemotherapy last week, 6 cycles of EC chemo, then six monthly shots of Denosumab(? spelling) and daily Tamoxifen. My oncologist wasn't sure about the need for chemo but he went for it in the end to lower the tumour burden before starting hormone therapy. He prefers to hit it hard first.I think this may be a different approach from the one in the US, I have to just hope that he is right. I'm a bit scared of the side effects of the Denosumab, has anyone had any positive or negative experience please?
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Mary - I love pesto! Good luck with rads and yes good RO reacted quickly.
Babs - How is CMF treating you so far?
Another CT scan for me tomorrow. Hopefully this will clarify everything and a decision can be made as to whether there is a tx change or not.
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my great niece Serenytee born last week
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gonna catch up
Bbl
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OMG Patty she's beautiful!
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lindae thanks ! Hoping for good results for you tomorrow. Being in limbo stinks. Better to know and move forward with a plan then to just keeping waiting.
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Vevs, they hit mine hard with pill form chemo first too. They have to try and knock those tumors down as much as they can b4 starting another TX.
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Hi All...
Been missing over a week as I had my left hip replaced due to arthritis, necrosis and bone mets. After 4 days in the hospital and 4 days in a rehabilitation center (nursing home) I just got home. I have to say the surgery and subsequent recovery are ALOT tougher than I expected. Emotionally, it was difficult to be so dependent on others for practically everything and physically because of the pain and very limited mobility including during sleep. I am so happy to be home but still out of sorts. Fortunately there is nothing I have to be doing right now so that's good.
Anyway, just wanted to say hello and let you know I am thinking of you all.
Amy
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Vevs - When I was being initially diagnosed, they also considered chemo to reduce the tumor load before starting hormone therapy. With 7 liver tumors and all lymph nodes effected, I was borderline and the Tumor Board said I could go either way. I chose letrozol and ibrance seems to be working well so far.
Amy - Good lord that is the week from hell! I am glad you have nothing to do. Hope you are surrounded by people who can continue to tend to you through the recuperation period. These things take time ...
Linda - good luck on scans! let us know!
>Z<
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Amy, sending powerful healing thoughts your way!!!
Do you have arthritis anywhere else? I have it in my lower spine, and it's really painful, plus I have bulging discs on top of the compression fractures. Are you keeping your pain under control? When it's really painful, the days can drag on endlessly.
My rescue Bulldog Sofia helps with some of my pain. Nothing like a warm puppy-duppy to keep up your spirits!
Sofia with the "cone of shame" a few years ago after she had a small procedure on her hind paw so she wouldn't like it to pieces.
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thanks Lita and Z, I am actually more scared of the side effects of the Desonumab, I've accepted that the chemo is going to be horrible and that the next 17 weeks will be an uphill struggle but the thought of a further 6 months os SE scares me.
Your bulldog is gorgeous Lita, here are min
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Vevs, your dogs are adorable! Look at that blond hair! I bet they're friendly. I checked on the SEs for denosumab (brand name Xgeva), and they are pretty similar to the SEs for Zometa which I have to get every three months for my bones. I believe you get Xgeva shots every month, but Zometa is an IV infusion.
Here's what I learned in a workshop about bone infusions (not sure it applies to shots/injections, but every little bit helps): The day before, drink LOTS of clear fluids so your body is hydrated. Also, don't eat anything too heavy (greasy, fatty, spicy) so you'll minimize any nausea and diarrhea. Also drink a lot the day of the shot and the day after, and follow the light diet the day of and day after, too. My oncologist told me I wouldn't have a problem the first time I had Zometa...boy was she WRONG!!! The next day I felt like I'd been hit by a truck, and had nausea, diarrhea, etc. This was because I DID NOT PREPARE. I went to the workshop AFTER my first infusion. Wish I had known about the workshop before I had that first infusion...would have saved me a lot of suffering.
The second infusion was a piece of cake. No problems at all. Sailed right thru, and that's because I did what the workshop said to do. Hopefully this will help you. I get my next infusion on 10/31.
The osteo necrosis in the jaw is supposed to be very rare as is the dyspnea (I had to look that up...it means shortness of breath). I get a little bit of that just from the Xeloda chemo I take. I get a little short of breath during the end of the second week of the cycle. I just take it easy and try to breathe deeply. Xeloda makes me a little dizzy too, but that probably goes along with the dyspnea.
Once again, I hope this helps, and let us know how things are going. We're all in this boat together.
Lita
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Amy, Thanks for letting us know how you are doing. You've been down a tough road for sure. May your recovery go smoothly now that you are home with your family. No rest in the hospital for sure!
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Thank you so much Lita, that is really helpful. I should try that perhaps the day before and during the chemo, it made me feel very nauseous for a couple of days. You're very lucky having workshops, I do feel like I'm paddling in the dark at times. I have stopped reading anything on Google, it's far more informative and positive here.
Yes the dogs are very friendly, I've just been on a long walk through the forest, it keeps me sane and I'm determined to get an hour of walking a day in come rain or shine!
Elen
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Thank you for your good wishes Lita, Lindalou & Z. Lita, I don't think I have arthritis elsewhere, although I do have lower back pain, I just assume it's from bone mets. I am managing pain with Oxycodne and Oxycontin. I had a therapist to my house today, exploring whether they would be useful or not. I decide NOT. This therapist was recommending exercises I was specifically told not to do. When I told her that she back pedaled and said she meant these would be exercises when I'm stronger - to me she seemed inexperienced and a waste of time. Fortunately when I said no to future services, she took it well.
Very sweet dogs Vevs. They'd brighten my day any day!
Amy
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Amy, it's always best to go with your gut. Good call on the therapist. You don't need that. It might make things worse.
Lita
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Hello everyone, here's the latest update. But first let me say that I find it interesting that some who were on Ibrance/Faslodex or Ibrance/Femara are moving to Xeloda and others are leaving Xeloda and going to Ibrance/combo. So I don't feel as strange as I have been because I thought my onco did not give the combo enough time but I guess I am not the only one leaving Ibrance/Faslodex and going to Xeloda. Before starting Xeloda though I had a bone scan today to confirm progression to my left knee and tomorrow I go in for mapping so I start next week with 10 radiation sessions.
I always read the posts and follow everyone in their walk on this bumpy road.
Aurora
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Hi, everyone,
After a period of almost 15 years. I now find myself with bone mets. I am taking letrozole and waiting for approval for IBrance.After ct and bone scans I have been told my scans show no specific site of activity, just alot of holes evenly distributed throughout. Have any of you actually seen your scans or spoken to the radiologists who have interpreted them? This round I have only seen my oncologist twice and I just shredded all my records from last experience the summer of 2015. I live in a rural area but travel to Vancouver to see the oncologist as that was where my original treatment began and most of my family live. This is really a tough pill to swallow I thought I was free of this. Thanks in advance
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remz - welcome. We have a good Ibrance thread with lots of experience to share. I hope you join us over there. We complain vociferously about the side effects and the neutropenia can be tricky to manage, but you will find many people doing pretty well. Ibrance & letrozol knocked my one small bone met to the curb quickly, so I am no expert in bone mets. But I do know it can work well on bone mets. I have asked for and received my scans and I have reviewed them. I know people who have discussed their scans directly with the radiologist. I have not done that, but proactively inquiring about treatment decisions and diagnostics has saved many women many times. You see it all the time on this forum. Get your scans, ask your questions, get your answers. The implications of having "a lot of holes evenly distributed throughout" is something I would want to understand. I haven't seen that often.
I hope you are well. Any pain?
>Z<
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A question for the group about vaccines...has anyone had issues after getting flu shots? The flyer lists Guilain Barr as a remote risk,but with compromised immune system I wondered about our risk. MO says no live virus vaccines like shingles or pneumonia so I am not taking those.
The last thing we need are more SEs or paralysis.
Thank you ladies! Always great information here!!!
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My MO says yes to flu shots and no to live virus, like yours. I've gotten flu shots in the last 3 years (since mbc dx) with no problem. This year I'm waiting a bit to recover from rads se and my current sinus infection. I'll probably get one late next week.
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Isn't it odd how different oncologists practice? Mine thinks that live vaccines, spaced well apart and only when I am feeling well, are fine. I got my shingles vaccine last year and waited several months before getting something else.
JJ
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I get my flu shot every year and I'm fine. I did get shingles vaccine 2 years ago and developed a mild case of shingles.
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I got a flu shot last year and will again this year. Also had shingles vaccine last year and had a mild flare of shingles.
Amy - So glad to hear from you. Take good care.
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Thank you for the vaccine info! You've talked me off the ledge yet again
Welcome to our new members...this group has been a lifeline through my first year. You will feel so welcomed here though we wish you didn't have to join us.
Jen and Linda- So good to hear about good scans! The best stress reducer ever!
Patty - You sound like a new woman! Except for that hospital visit it sounds like you are enjoying life again...so happy for you and your family.
Momallthetime and Dani - Holding you close these days.
Hope everyone has a decent day!
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I have homozygous MTHFR, and my GP and my onc both advise me not to get the flu shot.
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thx zarovka..I do have pain, specifically in my hips and right shoulder where I have had lymphedema for years since my mastectomy years ago. I opted for no reconstruction at that time and despite having a prosthesis I was able to cope fairly well until this last week when I started on clasteon. I am having a problem distinguishing between joint,bone,nerve and muscle pain. Until a month ago, I worked full time in a physically and mentally demanding job. I am unable to do even the easiest things for any length of time. Sleeping during the daylight hours is now common place for me. The hardest part of this for me is being tired at least 80% of the time.
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