Bone Mets Thread
Comments
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Did anyone of you experience increase of bone pain caused by cold weather? After a rather warm start into winter, we are having a rather cold weather constantly at or below 0°C here in Germany since about 2 weeks. Since then, all bones in my body are aching, especially my spine (that is where my mets are) and some ribs. My physiotherapist told me today, that it might well be caused by the cold.
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Netta,
Short answer: yes. Long answer: Hell, yes. Welcome to barometer bones.
Heating pads and warm baths will provide relief. So will opiates, but since that article in the New York Times about German reluctance to use pain medications, all of us Yanks see you as handling pain with bite sticks and chamomile tea
Heading off to fire up the old heating pad myself. I have them dotted around the house, upstairs and down.
Best wishes,
Jennifer
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Hi all. Lots of support and info on these boards. Just back from Herceptin treatment and will start Tykerb tonight. Already taking letrozole since I stopped Faslodex.
I just finished 10 days of prednisone + a shot and antibiotics for cold and bronchitis. I think I can finally tell the difference between bone mets pain and arthritis. I’m not suggesting this as a treatment but found this interesting.
The spots of my thoracic spinal mets still bother me . But the right hip and lower back must be arthritis because it feels fine. There weren’t any mets there on my last PET 3 months ago but I convinced myself that the pain was new mets. I had a scan yesterday so I’ll find out for sure in a few days.
Cold weather and fear of falling on ice and snow has limited my outdoor activity. I enjoy outdoors more than the mall.
I don’t like the side effects of prednisone..bad sleep, grumpy when you stop and of course it weakens bones but it is a lifesaver for asthma.
I think the fear of the mets pain or broken has been ruling my life since last May. Not knowing what to expect , I sometimes go to the dark side.
Starting Tykerb tonight. Hoping it stops those mets.
Maire0 -
Hi ladies - just reporting in. Had firstZometa infusion yesterday. Jaylea - thought the Claritin trick would work, but no. Headache, dizziness, nausea, chills, bone pain everywhere it seems - especially in my back and knees. Home from work watching the birds - get to be with my husband and enjoy a 40 degree day. Hope you all are blessed by someone who loves you - Happy Valentines Day!
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Netta, MJH, Jennifer, yaasss to cold affecting the bones and relief with Tylenol and heating pad. I was miserable in January and the heating pad became my best friend. Added Tylenol and was in heaven, 'tho I do worry about overloading my poor liver, which has to metabolize so much.
Maire, DH and I went up to the snow in January. I was hoping to get a couple of runs in but lungs/energy just weren't with me. Packing for the trip home, DH warned me about slipping on the snow. I hate to be babied and thought "I know more about snow than you do, dude." Sure enough, I slipped and fell at the back of the truck. Luckily it had snowed the previous night so I had a bit of cushion. I was more worried about DH seeing me - not because of the "I told you so" but because he'd want to wrap me in bubble wrap after that. So I quickly jumped up, brushed off the snow, and nonchalantly climbed into the truck. Luckily he was already in the drivers side and was doing something with his phone so I got away with it. But it made me think of all of you that have to deal with snow on a regular basis. I totally relate to the worry. Good luck and let us know how the Tykerb is treating you.
CloudNine, I am so sorry the Zometa was a rough go. Are you feeling better today? I hope I didn't oversell the Claritin. Like you, I had flu-like symptoms for a couple of days that first infusion. The next cycle was markedly better, and now they are no big deal.
Happy Valentines Day to all you lovelies!
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CloudNine - so sorry I didn't chime in before your first Zometa infusion. My first one was awful too - chills and vomiting. Ack! The next month I mentioned it to the nurse and she recommended slowing the drip time from 15 min to 30 min. So I tried that and I was fine with no side effects. I've bee getting Zometa for over 3 years at 30 minute drips just to be sure I don't get those side effects - HOWEVER many will tell you that the first infusion is the worst and that the second will be fine without adjusting the drip time. Hang in there. It will get better.
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Hi Lev! Welcome here........we know, nobody wants to join us. I found this group of wanderful people when I was thinking of escaping this life, since I wouldn't be able to live it the way I wanted. 40 years ago I lost my mother du MBC in the bones very fast. But now we have a lot more treatments, trials and we hope they will buy us more time. You are on the right place at the right time. Talk to your MO and ask him to make changes , explain how you feel and that it's not acceptable for you.
Success with the treatment. Love and hugs
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lev.....hi, welcome to the thread. It would be great if we didn't need these Stage IV threads but as we do, we all support each other with knowledge and love. I agree with Iwrite, although it took me ten cycles for my neutropenia to be Grade 4, which is the criteria on my trial for going down from 125mgm to 100mgm. The side effects don't accumulate and you do get used to them. So far my mets are stable. They are right down my spine, in my skull, pelvis, hip, ribs and shoulders so I'm told there is extensive disease and it will be a slow process. The very fact that I'm stable tells me that Ibrance is doing good work.
I have found though that this cycle, since I went from having a two week break in all previous cycles to a one week break this time, my SEs have been a lot more troublesome - very much like my first two cycles at 125mgm until I became adjusted. Nausea plus plus and extreme tiredness but I'm not too worried as I expect to adjust after a couple of cycles.
Anita....love the photo but I'm so sorry about your liver mets. That must be so scary. I'll add you to my prayers and thoughts.
Hugs to everyone
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At my next mo appointment, we are scheduling next scan. Had a PET for diagnosis in May and another in October. Just wondering... PET vs CT? Pros and cons? Just looking for opinions. Thanks!
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My favorite is PET plus CT with contrast. You get activity and size. PET is done with CT but if you don't ask for a CT with contrast then CT is not diagnostic quality, just for orienting the PET in space. Many docs have told me PET is the best because what you care about is activity but my mets seem to grow without lighting up a PET.
PET/CT with contrast is more radiation so it may make sense to alternate...
Z
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Swess, I got PET scans for several years and then insurance no longer paid for them. Onc switched me to bone scan and ct scan with contrast. Many insurances won't approve the PET. I've had a stretch of stability so nothing's showing up so far on the scans except a small patch of something last time on my thigh. An xray of that area showed nothing conclusive, so it's just being monitored.
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Hi - Just dx with a single bone met in my rib today, after 15 years disease free from my stage 2a dx. This showed up on an MRI about 2 weeks ago (I have no pain), followed by a PET scan and finally a biopsy, so I've had a little time for it to sink in.
I’m oddly calm now that I know what I’m dealing with and have a treatment plan on place.
My original dx was ER/PR and Her2 positive. This one appears to have dropped the PR, but still has the ER and Her2. I need to read more about what that means.
Treatment will be radiation, fosamax, ibrance amd herceptin.
Anyway, I just recently joined this site and I’m looking forward to meeting all of you.
Lauren
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Hi Everyone, I'm cross posting as I posted in the H&P thread. So I had some progression on my scans on Jan 23rd. The spot is very small. The bone scan picked it up but the CT did not. Its on the acetabulum. All other bone spots are stable. She took me off tamoxifen because my blood work indicates that I am now menopausal and put me on Letrozole instead. She took me off Perjeta because there is no proof that it is effective after a year. I've been on the Letrozole for 3 weeks. A consult with a radiation oncologist was recommended to zap the spot. My hip doesn't hurt. I'm not having any pain. I'm wondering what you all think. I just really don't know what to think?
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Welcome Lauren. That weird calm is your new normal. Congrats on getting their so quickly.
You are oligometastatic. You might consider consulting with an RO to zap that met. There is strong evidence that people who present with minimal metastasis can control the cancer with local treatment even though, technically, you have a systemic disease.
>Z<
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I am sad to report that Aurora passed away today. Her daughter sent me the news in a PM and asked that I post to Aurora's favorite threads. I will miss Aurora, but I know she is at peace and free from pain.
Hugs and prayers from, Lynne
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Oh, that such very, very sad news about Aurora!! She was such a gutsy woman, very strong,and it seems that she tried everything, for as long as she could!
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Aurora's passing is very upsetting to me. Her brain mets were dx'd not too long after mine, and she started to go downhill. This damn disease!
We just never, never know how much time we truly have left. I will light a candle for her and her family.
Prayers for all of us.
L
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I’m very sorry to hear about Aurora. Prayers for her family
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Hi Zarova,
Thanks for the warm welcome. I just learned that word - oligometastasis - this week. My MO mentioned it to me also and said he wants to radiate it straight away, even though I have no pain, for that very reason. I will see the RO on Monday to get that rolling. I find a lot of hope in that prospect. thank you
Lauren
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Lauren - You are likely in good shape with a great prognosis. We want to hear all about how they treat you and how it works out.
>Z<
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Welcome, Lauren! You're in good hands here, and things sound encouraging!
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Lynne, thanks for letting us know about Aurora's passing. I'm so sad to hear this news, she was a wonderful presence on these boards and will be greatly missed. Rest in peace beautiful lady 💜
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Welcome Lauren. It sounds like you have some very good options! You will find great support here. Wonderful group of knowledgeable folks
.I look forward to hearing how the radiation works for you. 0 -
So saddened by Aurora's passing. Every loss is equally devastating. Gut wrenching. Cancer Sucks!
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Hi - I have a quick question. I am meeting with the RO next week to get set up to radiate the bone met in my rib. What is the typical protocol for Bone met eadiation in terms of timing? I had 7.5 weeks of M-F radiation to the breast and lymph node area with my original dx. Will this be similar in terms of diration
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Welcome Lauren,
I am also pretty new to this MBC sisterhood we never wanted to join...recived my dx 20DEC17.
I have been reading about oligometastasis tx for the past few wks, hoping it might be an option for me too. It looks like it probably will not be an option from what the RO offered me.
Rad tx for mets is different than when we went thru previous active rad tx. From what I have read, it can range from 1 to 10 sessions instead of 30+. I had 36 days straight with wkends off.
Others on this site will chime in for you too, especially if they have had this kind of tx on oligomets. Much wisdom to be gained from this amazing group of MBC Warriors who so generously share their time and experiences to help us newbies maneuver thru this daunting journey.
Warmly,
V
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Hi Lauren,
It’s still early hours of the morning here (sleep seems to be an issue with Faslodex for me) so I will be brief. I had rads to my spine/hip to get rid of problems with sciatica from the mets. They mapped it out with CT and then it was one zap. That’s all it took. Unfortunately I am now experiencing some new pain in my right hip and groin. Waiting for a bone scan but may need another dose of rads to alleviate the pain.
Glad you found the site. You will the answers you need here
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My sister has two vertebrae collapse on her from breast cancer 3 and a half years ago and she is still going strong despite the 2-3 years prognosis she was given. She was unable to walk when she went to emergency but now walks quite well and gardens. Has anyone here with metastatic spinal collapse lived past 5 years?
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Lauren - I would get a couple opinions if they want to do a long course of radiation. Ask about SBRT which is a high dose for a short period (1-5 treatments). Obviously simpler and there are advantages in terms of immune response, which is the magical side effect of radiation treatment.
>Z<
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hi lauren, just want to echo what Z said above. SBRT is what I’ve had to zap a met in my hip and on my arm. They did a CT and mapped out their plan, gave me a couple of tiny tattoos to help the tech with set up for each session, and I had 10 zaps to my hip and 5 zaps to my arm. With ribs, I would ask about what they can do to help protect the lungs and other soft tissue behind the rib (which is why they will probably use SBRT).
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