Bone Mets Thread
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Anx789 - I would ask your MO what your options are and why he/she feels you need to change treatment. Typically my MO only changes treatment if I have recent imaging that shows a progression.
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@emac877 my mistake, I had my 2nd Petscan last week ( not last year). I had extensive bone met and lung nodules on last year’s pet scan. Petscan last week shows progression and new lesion on bones only, my lungs are stable and no new lesion anywhere else except on bone. While on Verzenio, and before your brain met and liver met, did you ever had progression or new lesions on bone?
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Hi anx789, I was on iBrance/faslodex and had progression fairly quickly in a bone spot and a liver spot but other areas were improved. We did radiation to the one bone spot and gave it a few more weeks but my liver spots continued to multiply. Radiation if it’s one spot has worked for some who have then continued their current treatment with success. But I had multiple spots so I switched to Enhertu because I am her2 low. That drug didn’t work in my bones so I am in the process of getting approval for a clinical trial. I met with a second opinion doctor at UCLA and she recommended the trial but also shared several different options I have since I’m er pos. So there are many options of drugs to try. If you have the Pik3ca mutation there are drugs like piqray. There is also xeloda. Orserdu is newly approved if you have the ESR1 mutation. And several other drugs and treatments in the pipeline. I totally understand the fear of starting a new treatment. I just went through it and now I’m doing it again. But you have several options. I hope this helps. Blessings :)
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After 11 months on Ibrance/Fulvestrant I had a single spot of bone progression which we treated with radiation. I continued I/F for a total of 19 cycles before my progression was multi focal.
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@mommacj I’m seeing my MO this Friday; over the phone she mentioned chemo IV and oral chemo. im trying to get a 2nd opinion from Dr Waisman of COH Duarte. He was the one that recommended Kisqali for me instead of chemo. He also said some of the things that light up in Petscan can be arthritis. Did you get biopsy on the one bone spot?The report mentioned progression and two new lesions in bone but did not mention if the new lesions are hypermetabolic- is there is a difference?
@rk2020 what did you mean by multi focal? I noticed you did Verzenio after Ibrance, is possible for me to change to Verzenio or Ibrance? Did you also have a biopsy?
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@anx789 When I was originally dx MBC I had a bone biopsy which was sent for genomic testing. My original dx included mets to T11, sacrum, both iliac and my left femur which need a rod placement. After 19 cycles on Ibrance/Fulvestrant, I had progression to several new bone areas (multi focal meaning 2 or more). I don’t have access to my notes right now but in order to start Verzenio, I needed a break of a certain number of weeks. I don't remember how many. You can probably google that. While waiting I treated a painful spot with radiation. I chose to swap out my hormone therapy as well going from Fulvestrant (an estrogen receptor degrader) to anastrozole (an AI). I already knew I had the CDK2NA mutation so another cdk4/6 inhibitor probably wasn’t the best choice for me. Combine that with moving from a SERD to an AI and it was a poor choice albeit one that 2 oncologists thought was worth a shot. So after 3 months on this combo I once again had significant progression and now it was in my liver. 😞 That’s when I moved to Xeloda which quickly killed off all the active spots in my bones and liver.
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anx - No, even now I do show uptake in my bones but I have no new spots showing up. The uptake is in the same areas it always is.
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to Everyone, thanks for all your words and knowledge. After tumor markers went up, I need to get a scan. My last scan was a year ago.
I tried going last week and had bad anxiety attack and didn’t do it. I just can’t take laying done and so controlled. I don’t know why. I get anxious thinking about it.
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positive2strong, I get very anxious with scans, especially MRI. But, last year I talked to the people doing the scans and they suggested taking a mild anti-anxiety med prior to the scan. I take Lorazapam prior to a scan and it really helps. I hope you find something that works for you. Hugs, Jan
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positive2strong,
I take low dose valium (2 mg) about 30-60 minutes prior to scans, especially bone scans, and the techs always offer additional comfort measures. Comfort measures to ask for if not offered: warm blanket, pillow under your knees, portable fan aimed near by, background music, small pillow on your chest so machine does not get quite so close, take your shoes off for maximum comfort, I like a light cloth over my eyes so I don't look (some people may not like this), don't wear a mask, ask the tech to talk to you every few minutes as each body part is completed. Scans have gotten easier for me now that I know what to do, what to ask for, and what to expect.
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positive, I'm so sorry the scans give you such anxiety. I would definitely ask for "something" to help take the edge off.
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I'm 71 now.
Lumpectomy in July 2018, followed by radiation, then started on anastrozole.
DEXA scans every two years. 9/14 scan showed worsening osteopenia except in L1- L4 (lumbar spine) which showed an increase in bone density (I'm not on a bisphosphonate). The scan report has a statement indicating that were "degenerative changes which may falsely elevate the results".
Has anybody had a similar scenario where it was the increase in density on DEXA scan (despite not being on a bisphosphonate) was the initial basis for the subsequent diagnosis of bone mets?
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Has anyone had their tumour markers rise? My CA-125 markers were around the low 20s for ages but they've jumped alarmingly over the past 6 months to their present level of 90. My onc said he doesn't look at the markers in isolation but my nuclear bone scan last month showed 'activity' (his word). I had a CT scan today and he says to wait a week (!) until he looks at all the results. He said it could mean that bones might be healing. I didn't think they could. I assume the only reason my tumour markers are rising is because the cancer is active again. Am terrified. Any information, insights, gratefully received
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I haven had my scan yet but my blood work from Sept 29 showed my tumor markers at 95 they had been stable at 45 for awhile
so I am worrying. The onc called and said I need to get my scan done.
I have been on faxodex and 75 m Ibrance for 2 years my last scan a year ago showed some Mets smaller
what next
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@positive2strong I spotted your post about not having coverage for Xgeva, I agree that Medicare Part B should cover it if it is given in the cancer center and not picked up at a local pharmacy but in case you are having a co-pay, Amgen has a patient assistance program to help with co-pays —
Info is here:
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@positve2strong, I hope you find something to ease your nerves and that you have your scan very soon. I'll be holding your hand. I'm pretty scared right now too. Hugs
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aiobheann, My TMs slowly increased then jumped up to 45, and two sequential nuc bone scans showed modest but increasing progression, whereas CT showed nothing. A new blood biopsy revealed a PI3KCA mutant, so we added Celebrex/Celecoxib (200mg/day) and pitavastatin (2mg/day), both of which are known to be strong inhibitors of PI3KCA, and the TMs dropped to normal, actually to the lowest they have been all year, and now I have two readings in normal range. Will have to wait for scans to see if the nuc bone confirms improvement predicted by the TMs…
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cure-ious, Great news that your TMs have dropped to normal and are holding there at a lower level. I'm ignorant about what tests are involved in blood biopsies. Is the P13KCA mutant revealed in a genetic test? We don't have the facility to do genetic tests in most of our hospitals and it's rare to be referred for one. I had a genetic test a couple of years ago and I didn't seem to have a breast cancer gene but I do carry a bowel cancer gene. My monthly blood tests analyse more general things such as levels of red and white cells, minerals etc. and of course CA-125. I have a ct every 12 weeks and nuc bone scan every 2 years so we have a different monitoring system. Fingers crossed that nuc bone confirms improvement
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Aoibheann, my MO ordered Guardant 360, its a blood test. It picked up PI3KCA and ESR1 mutations, neither of which were present when they did Foundation one blood test three years earlier, so these are newly-acquired mutations driving some resistance, and I was surprised that just adding Celebrex (NSAID) and statin was able to drop the TMs. The test also showed a jump of tumor mutation burden (from 1 to 10.5), which is an indicator of resistance to CDK4,6i, so I dropped my Abemaciclib to just take the nighttime dose, assuming it may not be doing much anymore but maybe can still contribute somewhat, now that the other drugs are reducing the resistance. So the TMs dropped to normal range despite the fact that I cut the CDK4,6i in half… It seems that the genetic testing is a lot more common now, so I would ask for a new test
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Cure-ious, that is very interesting. When you say MO do you mean your oncologist or your general practioner (gp as we call them here)? Were you ok with the Celebrex? I find NSAIDs very hard on my stomach. I can't see on your signature what other drugs you're on, apart from Abemaciclib. Are you able to tolerate it?
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aoibheann, Yes, my medical oncologist (MO) ordered the Guardant 360 test, based on the scans indicating progression would probably be coming soon. I don't notice any side effects from the Celebrex and it helps with osteoarthritis and joint pain!
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My TM is also going up, too and last scan shows progression on spine (new lesion on L5). I have extensive bone met only. My MO wants to switch med but waiting for biopsy first. I currently have no pain but a month ago I have this numbing sensation on my back when I sit down, it comes and go. It’s above my waist, on the right side of my spine. Does it has something to do with my spine met or is it a SE of medicine? I am currently on Kisqali & Faslodex. I am scared that it has something to do with my liver, since it’s on the right side. Thanks for any input.
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Can someone comment on L4 compression problems? I have cancer in that area and severe burning pain at the base of the spine and half way down the back of my legs. At times it's a 9 pain level just sitting. Trying Gabapentin 100 mg, which doesn't seem to help, so I upped it today to 200mg. and added tylenol. Minor improvement in pain level. When do you make the decision to call for medical help and what type of treatment should I expect? Never had radiation. Thanks for any input.
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irishlove,
I also have spinal lesions, and pay close attention to any symptoms that suggest possible compression. I'd highly recommend you get evaluated ASAP. I think intervention could include a back surgeon depending on findings. Please don't delay.
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Irish love, I also have compression fractures in my T4 and T8 and I can't remember where else. Definitely get yourself assessed asap. You've got options such as radiotherapy, nerve block and possibly many more in the US that I'm unaware of. I've had radiation on several areas and I'm on strong pain relief - 87mg fentanyl patches x 72hrs, 300mg x gabapentin, 15mg oxycontin as needed. I can't say that I'm painfree but it helps with some of it. The downside is that it makes me even dopier than I might otherwise be. I am fatigued but I think that may be a se of femara and faslodex.
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aoibheann, Is that correct, its been 11 years now since your diagnosis of ER-positive MBC? And you are still on endocrine therapy?! and is the cancer still confined to bone?!
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@weninwi @aoibheann Thank you so much for responding.. I put a call into the MO's office. He's left the practice and the new MO has not started yet. A RN just called me and we covered this along with the fact I have MS and it's hard to decipher what's what. She had me track down an Orthopedic Doc who takes my insurance (I'll need a referral) and she will speak to a different provider to see what they recommend. I appreciate you ladies taking time for me.
Laurel
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I want to give an update on what's going on with me these days. I've been on Xeloda over three years. Last year about this time, progression was seen in my left thigh. I was given one powerful radiation treatment to the area and continued with Xeloda.
Last month, dh and I took a several-day scenic train ride vacation (not as fancy as it sounds) which involved much sitting. Even tho I took a cushion to sit on, my left groin was very sore when I got home. I hoped with some rest it would improve. But after about a week, it was obvious something was wrong.
Went to the local er who transferred me to the Pittsburgh hospital where my onc is. Tests showed a pending fracture to the femur. The orthopedic oncologist surgeon put a rod in it (three incisions, one is 4 inches long). While recovering and working towards discharge from the hospital, it was discovered I had a pulmonary embolism. I was then given a heparin (blood thinner) iv drip and eventually switched to a pill form of blood thinner. Counting the day at the ER, I spent seven unexpected days in the hospital. I've been home four days. An occupational therapist will be coming to the house twice a week. I don't have pain but aches and discomfort. I'm using a walker to get around. I get worn out easily but that should improve over time. I have a follow up appt with the surgeon this week.
I'm so glad to be home, but I cannot tell you how impressed I was with the entire networking structure of the hospital's medical professionals and their support staff. They are incredible and I was overwhelmed with gratitude to have this care available to me.
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