Topic: Bone Mets Thread

Jun 7, 2021 11:57AM BigPeaches wrote:

Has anyone ever had hearing issues after Rads? I noticed when everyone started wearing masks that I had been lip reading and really couldn't hear anything out of my right ear. Finally I just saw an ENT and he said I could have permanent damage possibly due to the radiation I had on my skull. He cleaned them out and I can hear A LOT better but there is still problems on the right.

Other than that, I just passed 3 years with this metistatic mess and I'm thankful for it!

Jun 8, 2021 02:34PM thebar1957 wrote:

Hello fellow MBCers,

My name is Teri, 64 years old, diagnosed in 2013 with stage 1 ILC ER+Her2- and eight years later here I am with MBC. I took AIs for five years after my first diagnosis and then stopped. My onc said the cancer probably broke through when I stopped taking the AIs. I was experiencing intense pain in my legs at night and an enlarged lymph node in my left armpit after the COVID shot. The drs thought it was from the COVID shot but I disagreed as that lymph node had been bothering me for weeks before the COVID shot. The biopsy showed cancer in the lymph node and a pet scan showed cancer in my bones. So I'm on my third week of Ibrance and I received my first shots of Faslodex three weeks ago. Hardly any side effects except for aches and pains which I've had for years. I'm 64 years old, married, no kids. I have nine biological sisters and I'm the only sister with breast cancer.

Jun 8, 2021 06:06PM KBL wrote:

Thebar57, it was nice to meet you in the Zoom call yesterday I’m sorry you’re here for this reason but so glad you joined us.

I was the only one of five siblings to have cancer, let alone breast cancer. I’ve had it for eight years but was only diagnosed two years ago.In a matter of a few months last year, my eldest brother was diagnosed with breast cancer, and my second oldest brother was diagnosed with renal cell carcinoma and passed within three months. Things can change on a dime, and I really hope your sisters keep a watchful eye just in case.

Jun 12, 2021 08:37PM emac877 wrote:

Deamo1 - My bone mets felt like a deep dull pain. The one's I had in my back I rarely felt but if I did it was not a zap like feeling.

Nicole - I haven't interacted with Moomala, please let us know if you hear something. I always wonder about those of us who disappear from here. I like to think it's because they are feeling better and out enjoying a life where cancer doesn't try to steal the drivers seat.

Jun 15, 2021 06:54PM moth wrote:

Positive2strong - fingers crossed your biopsy shows a benign result. What did the MRI actually say? It could be other things.

Yes, a met is a tumor. It's a malignancy that has migrated from the original site of the cancer. My spine met is T11 (just a couple above L1)

Jun 16, 2021 08:43AM prairiesea wrote:

Sorry to hear about your recent imaging discoveries, TheBar and Positive....hoping that biopsies and treatment go well.

I'm facing a decision between kyphoplasty and radiation to deal with ongoing bone mets back pain I wonder if anyone has experience to weigh in on. Had rads to my back when I first started treatment in April. Still having intermittent back pain, sometimes quite severe. I also had fourth compression fracture discovered in April. Wanting to slow down kyphosis and pain, I asked spine doctor (who has screwed up before so I have limited confidence but don't know how to get him out of my treatment plan) about kyphoplasty and he was enthusiastic (seemed to think that heat of the cement would even kill some of the cancer cells, which I doubt). So with my MO's blessing I'm having an MRI to assess this today, and a consult tomorrow. Meanwhile, my second opinion onc at a cancer center had recommended further radiation to deal with pain from my ribs....that has decreased but my onc here still thinks further radiation for back pain might improve QOL while the Ibrance/Letrozole slowly (hopefully) decreases tumors in my back. RO is willing to go ahead with some targeted rads (with "BBs"? which I guess are markers to better target painful places) but thinks kyphoplasty is a BAD idea because it has a very uncertain possibility of improving things and could make my already fragile back worse. I tend to find RO to be the most trustworthy of my many physicians....but MO wants me to at least get the consultation (and was glad to have an MRI for some other purpose that could also give us an early view of how treatment may be affecting spine mets....he doesn't want to order his own imaging until August).

So this is too long but, my questions are, anyone have good/bad experiences with kyphoplasty? Also, I've seen some people's Oncs have them go OFF Ibrance while having radiation. I think that starting Ibrance (at max dose) DURING radiation in April may have contributed to the extreme decline in my WBC/Neutrophil counts while on my first cycle of 125. My WBC already went down with radiation and the further decline on Ibrance caused a 3 week break and decrease in dosage between the first two cycles (just finished Cycle 2 , waiting for results from blood work done yesterday). I have planned a family trip to California in July to see our daughter who lives there and very belatedly scatter my parents ashes in the Pacific Ocean near where they used to live, and I don't want anything to get in the way of that.

I wonder: should I just wait 'til I get back for either treatment? Or, as all the doctors seem all too confident about, trust that I won't get severe neutropenia again before or while I'm in California? Sort of hoped the radiation would improve my back enough to do some longer walking/hiking than I usually can, but maybe the risks are not worth it. Maybe I should just talk to palliative care about drugs (went off all of the NSAIDs and Ibuprofen I was taking when my pain was at its worst and am not sure if it's ok to go back on them with the cancer drugs I'm taking. RO keeps pushing Tramadol but I just don't want to do opioids and have enough trouble with constipation because of anti-nausea drugs I take occasionally). Thanks for any thoughts.

Jun 16, 2021 06:06PM prairiesea wrote:

Thanks Divine. Your perspective is helpful. I take letrozole (Femara) with Ibrance. I suppose I could suggest going off Ibrance for a cycle, but having just started treatment I think Onc is going to not want to take such a long wait between cycles.

Complicated now by most recent blood results....neutrophils are way down again after 3rd week on 100 dose of Ibrance. Frustrating as it took 3 week to come back up last time. I will have to talk to them about how to work this out. Onc was so sure it wouldn't happen again, sometimes I find their over-confidence really annoying......

Jun 16, 2021 09:41PM Positive2strong wrote:

it started In Jan that when I sat down for awhile and then would get up my right leg didn’t work but once I got going I was ok

Then it just got worse with pain in my right leg when I walked. But sitting and sleeping no pain now I have some pain sleeping. I thought it was sciatic as my husband has always had back problems and then broke his neck 3 yrs ago so I do all the lifting etc

My husband insisted I see a Dr. and Of course he said I needed an mri I found a stand up MRI and I never thought this

Jun 17, 2021 01:20AM sunnidays wrote:

I am not sure if this is the correct place to put this.

What is the longest someone has had bone-only mets? are there any theories or research on why some people have bone-only involvement for years, or it never moves on from bone-only involvement for some people?, or conversely why it moves on from bone very quickly for some people is it all random maybe?

Jun 17, 2021 04:07AM DivineMrsM wrote:

sunnidays, certainly there are what are called “outliers” who live many years with metastatic breast cancer to the bone without further spread. There are other members of the forum that can explain more clearly and thoroughly than I can what some reasons are why this occurs, and when they see your question, I’m sure they will explain in better detail. For example, some women have a slower, lazier cancer.

On the other hand, yes, there is a randomness about it.

I found a lump in my breast in Dec 2010, officially diagnosed the following month metastatic to the bone and have remained that way; that makes it 10+ years so far.

Jun 17, 2021 09:30AM - edited Jun 17, 2021 09:31AM by moth

sunnidays, we don't have a good understanding of the mechanism of initial metastasis or its subsequent spread. So we just don't know why some people's cancer is very indolent and others' spreads like wildfire. Grade is definitely a factor. And while bone only is considered to be the most optimal, there are pts whose cancer progresses rapidly. I've read some oncs speculating that these were maybe not really bone only - they had undetectable visceral mets at prsentation as well. Also bone has a very good blood supply so blood transmission of the cancer can easily occur but we don't seem to know which types spread more by lymph versus by blood.

There is a study looking at the 2010-2015 SEER data set (which would be prior to CDK4/6 for hr+ and immunotherapy for tnbc - those shifted the curves slightly). You can see some of the survival curves on Table 3. Hormone status & location of mets do matter a lot. Bone only are the most favourable. So you do get a lot of outliers. https://bmccancer.biomedcentral.com/articles/10.11...

Jun 17, 2021 11:59AM GoKale4320 wrote:

Positive 2Strong- I had a lot of pain leading up to my diagnosis. I had to ask about getting radiation and felt lucky that I could get in quickly. I had 5 sessions of radiation and it took several weeks after that to notice a big difference. During that time, I took Aleve and Tramodol for pain which helped a lot. Now I take 1 Aleve and 1 Tramodol a day. Radiation helped me regain physical ability I had lost and I am exercising again the same amount of time as before (maybe less intense, though).

MKestrel - I, too, thought I had hurt myself exercising. I waited before seeing the oncologist. If you haven’t gotten a treatment plan from your oncologist yet, I think it will be a relief to get a plan. Hopefully some radiation (there are different methods) will be scheduled.

Jun 17, 2021 06:18PM - edited Jun 18, 2021 06:40PM by Maire67

Sunnidays like Joyner I've had bone mets for 4 yr 2 mo. I did Herceptin , Kadcyla Taxol and rads in hip .spine., sacrum ,femur, acetabellum. PT after has helped be regain strength. I was blessed with a very proactive oncologist and PET scans that picked it up early. Now I'm being denied PET scans so now I get MRI no contrast.& Bone scans. Pain has been manageable. I'm very lucky. I wish you well

Jun 24, 2021 10:08AM carolina_girl63 wrote:

I can't believe that I find myself back here. I was so hoping that I would not need this sight for a very long time. I just found out last week that I have a compression fracture to my T11. Turns out I have a met there and one on my right pelvis. Next week I am scheduled for a CT guided biopsy and was wondering if anyone has had one of these and can give me some insight into what is going to happen at my appointment. I'm really just reeling from this and not sure how I am feeling.

Jun 24, 2021 10:38AM GoKale4320 wrote:

Hi Carolina Girl 63 - I had a bone biopsy from the sacrum, but I am not completely sure if it was CT guided, but it probably was. Had to have been guided by something! At the hospital, they numbed the area, gave me relaxing medicine and did the Biopsy while I was still awake. It was a simple procedure for me. I was loopy afterwards and slept for several hours at home. All this did was confirm that it was hormone-driven the same as before.

I have been prescribed Ibrance, Letrozole and Xgeva. You might be prescribed something similar. The Ibrance and Letrozole are taken by pill at home. The Xgeva is a bone-building drug I get by injection once a month at the cancer center.

It's a terrible shock, I know. It took me a while to deal with this, and I think I felt better mentally once I had a plan in place. There are several different treatments available for bone mets, and many people are able to get it under control and carry on with their lives.