Bone Mets Thread
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KitKat, I, too, have been diagnosed with TNBC. My original was ER+ in 1994, and the cancer recurred in 2017 (after 26 years!). Initially, it continued as ER+, but in Feb a biopsy determined TN. I'm doing great so far on Xeloda, and I'm doing lots of reading on new development.
Susan, what a wonderful, upbeat comment. Thanks from me, too!
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I mean technically in normal circumstances you aren't supposed to put the TENS patches right on the exact area of pain/bone, but around it right? I think my issue was what if I accidentally stick it on an area near mets I wasn't aware was there, which makes me wonder about the pelvis thing as I was using the TENS around that area in the summer, just before diagnosis. It was already there and I doubt it made it grow, but still. I never put the patches directly on the SIJ but on the muscle bits above and below.
I was wondering about using it for leg muscles, however, as I am stiff as a board down there now as I relearn how to walk and restrengthen everything. Oncologist question for sure, I think. Will report back!
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Hi SondraF,
Yes it was clean, but tumor markers kept going up so MO convinced insurance to do a PET Scan, which is t normally covered under my plan. He feels the bone Mets have been there since I found the lump in my clavicle in September.
North Texas, I live in Las Vegas, NV. My MO has many awards for his work with Triple Negative BC, and he is hopefully this treatment, immunotherapy and chemo, is the best route. I can constant headaches and pain in my right arm. So far no other symptoms that I’m aware of.I’m scared and unsure what to ask MO at next appt. I was so shocked and devastated by the news, I didn’t ask anything when he told me.
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Kitkat - at least the MO was on the ball and keeping track of things. I can't imagine how awful that news was to receive after everything else you've been through this year, treatment wise. It will take a while to process and accept for sure, its disappointing that process has to start during the holidays. I hope you can find some peace soon, however.
Did your headaches finally go away - it looks like perhaps not?
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SondraF, no, I still have the headaches continually. I have been able to keep them manageable with Oxycodone and Excederin Migraine, though. Nothing seems to help the arm pain in my right arm. Still have limited use of the arm.
Thank you for the kind words. Everyday it gets a little easier on the processing.
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my mom after the shot of Faslodex she feeling cold and tired for 6 hours and after she feeling good without pain and again after 4 hours she feeling cold and tired ..........it s normal or what can i help her ?
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JoynerL, WOW. I was blindsided after 10 years, I can't imagine what you felt after 26!
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I am joining this group as I was dx stage 4 this week.
Original dx in March 2017. Did the standard treatments— chemo, surgery, rads. Finished all of that in Dec 2017.
Been going to MO visits every 3 months after that.
In April 2019 my ALP number was slightly higher than it had been over the last 2 years. Still in normal range, just a few points higher. Next blood draw was in July. ALP was a few points higher, now 2 points above normal range. I know that with blood results, doctor’s are looking for trends, not just one high number. November was my next blood test. ALP climbing still to 136 which is 50% above my “normal” but no one was concerned as it was just a few points higher than desired.
Next, just before Thanksgiving, I couldn’t sleep in my bed due to pain in my back. While I have had back troubles for years, never had pain like this. Called my PCP who said it was probably a back strain but wanted to take a look I asked if the ALP number could represent bone or liver mets? He said it could but all my other numbers are in normal range so he wasn’t expecting bone mets.
He ordered X-rays of my thoracic spine. Results showed a compression fracture in T12.
Next was an MRI which I had this week. It shows bone mets in at least 5 places in my spine.
MO visit followed the MRI. Plan in place but not yet started. PET scan scheduled for next week. It is believed RO will want to do rads to my spine. After rads, will start I/L.
Right now on pain meds as the area around T6 is quite painful.
Thanks to all who have posted here so I have an idea of “what’s next” and not feel so alone.
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DodgersGirl,
Good luck getting a plan in place.
You raise a good point -- my internist told me a week or so ago that ALP numbers go out of whack when there are bone mets present. I was originally diagnosed in 2003. NO DOCTOR until this most recent visit ever said anything about ALP numbers and what they could mean. So you've raised something that people should look out for.
There is a very active Ibrance thread for stage 4 folks. I just started my 5th cycle of Ibrance. Although everyone's side effects can be different, after the first two cycles, mine settled down a lot and now I just know that I can expect some significant fatigue around days 13-15, plus here and there throughout the cycle if I haven't watched myself and try to do too much.
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Dodger, as Bev said, side effects vary a lot. But, I was on Ibrance for 23 months and had minimal side effects. I miss it. Good luck!!
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BevJen- I am searching for the Ibrance thread now. My MO is working to get insurance approval. Hope that steps is successful! MO said I won’t start I/L until I am done with whatever RO wants to do. So probably won’t start any new meds until 2020.
JoynerL- 23 months!! Hoping for a similar good run.
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Dodger, the string is called Topic:
Ibrance (Palbociclib)
Here's a link. I don't know whether it will work or not:
https://community.breastcancer.org/forum/8/topics/828848?page=654#idx_19596
You will find this to be a very active, kind, supportive group of (mostly but not all) women.
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JoynerL- thanks for the link. It worked!
I will join that thread.
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Question about bone mets to spine:
I have pain from mets to spine. I am not yet on treatment so MO wants RO to see me first. I have an appointment with RO Friday and I have a PET scan Thursday.
Meanwhile I have a muscle relaxer med and a pain med.
my question is - is it common to have back pain just from standing in one place??
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Hi Dodgersgirl, yes it would be if you have some collapsed vertebrae that have not been diagnosed yet...I had and still have that problem, even though they performed a khyphoplasty....but other people have done well and the pain was resolved with that operation. I wish you good luck!
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Thank you Frisky. I know T12 has a compression frucure but unknown about the rest of the spine.
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Be really careful, even while you get on and off the examination table...I end up with additional damage, while doing that...are you on any bone strengthening medications? If not, I’m sure that will be the first thing that will happen...xgeva is one of them...
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DodgersGirl, I had a similar presentation. The RO recommend SBRT for my bone met on spine. It was 3 treatments, but very effective. I would ask about the different treatment modalities for IR recommended Vertebroplasty for bone met, which I didn't select, but was also a good alternative. So you may want to have a referral to IR. As Frisky mentioned, Xgeva, which I am on monthly for bone strengthening, post RT. My question to the group, when do you think Xgeva can be done quarterly versus monthly? I read somewhere it can be adjusted after the first year to quarterly with similar benefit...
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hi Tinkebell, a lot depends on how long you're staying on the hormonals...the Xgeva is to protect us also p from the bone destructive se of estrogen suppression..typically.they won’t change timing until you move on to other treatments
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I will be getting XGEVA. Once insurance approves, I have to go to MO’s office to sign permission and they will give it to me at that same time to start monthly shots
Frisky, your comment about examination table is interesting as I had 2 doctor’s visits right before the pain in my back started. Wondering if I did damage something bouncing off the examination table?
Thanks everyone. Seems like a lot of unknowns right now so think having the PET and brain MRI will help with what needs to be done
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Dodgersgirl, next time they ask you to lay down, ask for help while getting down and getting up...relying on our backs is dangerous till the bones are fortified by the xgeva.
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Tinkerbell, I've had a varying schedule on Xgeva. I started, as I recall, every month a 3 years ago when I was on Ibrance and Faslodex. he backed it off to, I think, every three months. Then, in November of last year, 2018, I had a bout with hypercalcemia and was in the hospital for 5 days. My oncologist immediately switched me back to monthly on Xgeva to rebuild bone, since the hypercalcemia was kicking calcium out of my bones. He has kept me on monthly Xgeva as a hedge against hypercalcemia, I think.
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what kind of side effects should I be aware of from XGEVA?
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Here's an article with a list of possible side effects from Xgeva but I notice almost none of these, except for occasional constipation or diarrhea and watery eyes but those can also be from the other meds I am on.
https://www.breastcancer.org/treatment/druglist/xgeva
The big risky one is osteonecrosis of the jaw.
As for going from monthly to quarterly, my MO told me after a year of monthly she usually switches pts to quarterly Xgeva.
My Xgeva schedule has been all over the map for various reasons. After the first six months I was getting it every six weeks because of my infusion schedule with Herceptin. Then at about the nine month mark we went to quarterly. After two quarters, I went from NED to not NED with an active bone met so we went to six weeks again. My last shot was September because I am doing dental work and I will probably resume end of Feb beginning of March. Either every 9 weeks or quarterly.
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Some people have reported bone pain for a day or so after the shots, but I haven’t experienced any particular side effects. There are some dental issues to be aware of, and I hope that your onc has told you about that. Some of us take Claritin or the generic loratadin the day before, day of, and day after to head off the side effects. I used to but stopped
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I guess for now I'll stay on the Xgeva monthly for another 6 months, and then request a bone density scan. At times I feel over medicated, and hope at some point to lessen these monthly injections. I have difficulty weeding out what side effect comes from what medication but so far my quality of life is manageable...
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thanks! I take lorartadin daily now so will keep taking that. So far my MO mentioned SE that warrant a call to his office.
I will go to that XGEVA thread and read thru it.
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Dodgers, your journey sounds exactly like mine. Definitly get help on and off the table, it is flat and hard. Make sure they put the pillow thing under your knees, it helps alot, mine was a blue triangle looking thing. Rads will help with the back pain a lot.
I'm coming up on 2 years since my diagnosis, I still can't really bend over all the way, if I drop something, somebody else has to pick it up. If I walk too far or do too much, I'll pay for it the next day, but I am doing much better than I was. In the beginning I was in a back brace and using a walker, couldn't drive or do anything, so it does get better.
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BigPeaches— thank you. Your post gives me hope!
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DodgersGirl I discovered earlier this year that I had 3 compression fractures. The worst one is at T11 and I still have trouble with that one sometimes. For a long while it was difficult to stand up straight and just about impossible to bend over the sink and brush my teeth without balancing on my forearms. Getting in and out of bed involved rolling only. The nerve root became very irritated which caused a lot of pain in the beginning. Do what you need to do. It took several months to feel better. Hopefully you are seeing a back doctor. I just saw mine last week and he doesn't recommend kyphoplasty because I'm not having much trouble and I have so little bone height there. He'd like to put rods/pins in there. I am just not in the mood for back surgery.
I've lost over two inches of my height this year already. Radiation to T11 helped a ton although as BigPeaches said, get help with the table. It is painfully hard and flat.
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