Bone Mets Thread

@AJ - Thanks a lot. 1 down, 4 to go! 👏

Hi all. 4 down, 1 more to go (tomorrow).

So far the only se has been a headache which has worsen each day. My RO said it is either "pain flare" or an inflammatory reaction to the lesion dying. … not dangerous - just an indicator of response." Am alternating between tylenol and advil every 3 hours.

Follow-up MRI scheduled for mid October.

Thanks to all your well wishes and care!

Hi Ladies I want to give you all an update and some more questions. Last week I had my monthly appointment with my oncologist. So far treatment still working and tumor markers are down. I have my next PET scan in September. I am still dealing with feeling down and trying to work on it. I am grateful that thus far the Verzenio and flasodex are working. . Now questions LOL.

One of my mets is on my pubic/pelvis area, I have noticed that my entire pubic area is purple. I noticed it a couple of months ago, I called the oncologist office today and the triage nurse talked to the oncologist NP and she thinks it is a hematoma. She wants me to go the the urgent care. I will go tomorrow morning. Have any of you have this? In addition, there is a feeling of heaviness in my pelvis pubic region. I also have mets in my hip and other places. I don't know if this is contributing to the discoloration.

I am also having more pain. Not horrible but there. My doctor thinks that since my PET scans show mets shrinking that the pain may be from other things. When I was originally diagnosed wih cancer in 2013 the bone scans showed I had degenerative disc disease. so possibly it could be related . My neck is bothering me I know there is also mets there and spots on my spine, I really don't read the scan reports that clearly it makes me depressed. Right now, I am grateful that they are getting smaller,

Also, I had my second zometa infusion, thank God no side effects like the first time. I took some of you ladies suggestions.

jen, sorry to hear about the trouble you’re currently having. It’s good that you went to urgent care and interesting that the doctor thinks it’s a yeast infection. I hope the cream helps. How long before you follow up with your primary or oncologist?

A recent ct/bone scan I had showed possible activity in the spine, so a pet scan was ordered. Results today showed the spine lit up in a couple areas. A slightly enlarged lymph node in my neck also showed up on the scans. Plus, my CA15-3 marker has been rising since last fall. For several years, it hovered around 20, then last September, it began rising about five or ten points every month. Now it is at 84.

I’ve been on Xeloda since March 2020. Last October, I had surgery to get a rod put in my femor due to an impending break. There was a cancerous lesion to the bone, and I had radiation to that area several weeks after surgery. Up till then, I’d been getting an IV of Zometa every three months for at least ten years, but after surgery, the orthopedic surgeon said I should take a break from Zometa for awhile. Now my onc wants me to go back on it. I need to get dental clearance before I do, which I should get later this week when I see my dentist.

The onc says since Xeloda has worked pretty well up till now, she wants me to keep taking it, have the spine areas radiated, and start back with the Zometa; then scan again in two months to see if that’s containing the progression. I am okay with this, but am looking for some insight and reassurance from those on this thread. I’m of course bummed out and worried with this latest development.

I'm too new to the game to have insight, Divine, but your team seems to have been really competent for a long time. Sending you good hopes.

Divine- I had my thoracic spine radiated at the beginning of my treatment. It was only 5 sessions plus 1 to do the measurements. The side effects of the radiation was redness and a burning pain but it wasn't too bad. I took Advil for pain relief. Since it was only for 5 days it didn't disrupt my life too much. Best wishes!

@divinemrsm, that was good luck with the appointment - I hope all goes well with the treatment and that there are few, if any side effects. Your team sounds good. In your pocket for those quiet moments where you need the support.

divinemrsm, I had 3 spots radiated midway through firstline (Femara-Ibrance) because the bone mets were not near any organs they could double up the dose and do it in just 3 sessions, after that I got another year and a half before further progression. They did need to do an MRI to identify the mets precisely for radiation

Hi all, anyone here with skull mets? My mother is in severe pain from them & just started on Truqap, Fulvestrant & Zomeda. Working with palliative care to manage her pain. Would like any tips, insight, etc to help her or would like to know anyone else’s experience. Hoping that we will still have an ample amount of time with her and that she can continue to enjoy her life.

Hopingforhope,

I commend you looking out for your mom. Cancer is hard. There's lots of fatigue and pain at times. Ensure that she takes her pain medication as scheduled so she can stay ahead of pain.

Blessing to you and your mom.

Shirley

@hoping4hope, I was diagnosed de novo stage iv with "innumerable" sclerotic bone mets - no lytic lesions - on femurs, ribs, sternum, spine, upper arms, shoulders and skull nearly a year ago - well a year in 6 day's time. My diagnoses are a bit different - One tumour has two distinct kinds of cancer in it and the staining in the testing resulted in an"abherrant" result, according to the histology report. I am 100% ER positive 65% PR positive and one cancer type is HER negative and the other weakly positive.

I am on the ribociclib and letrozole combination. I have declined Denosumab for the moment because my DEXA scan showed that my bones are unusually mineral dense, and I have had a lot of dental work - onc is seriously unhappy with me. I guess they don't like pushback.

My neutrophils are in the 2.4 range (when I don't take cacao they drop to around 1.6 on the Friday of the ribociclib "off" week) - within normal range but my neutrophil/leucocyte ratio is still good enough for onc to be happy with it.

So far my tumor markers have been on a slow but steady downward trend. However last bloods showed my CA15-3 went from 11 to 12 - but I am told that it can bounce around a bit and I have a cold and have just started probiotics. All liver and kidney functions are going well.

I have been extraordinarily lucky with side effects and pain - pretty much none to speak of. Which is good, because my body does not seem to process opiates/painkillers the way others do. Things like paracetamol do nothing for me. The only effective painkillers I have used are aspirin and years ago morphine when my appendix burst. This complicated dental work - dentist was almost in tears when I told him the opiates he prescribed wouldn't work.

I have even been given the green light to rejoin gym and do resistance training, because I will do anything, rather than use the bone strengthening drugs.

However, before I was diagnosed I totally lost my appetite - not related to my cancer - it has happened before to me. So I have lost about 50 kgs across a 14 month period. Drs have no idea what it is and I joke that the appetite thing will kill me before the cancer does. But now they are starting to be quietly concerned about it. I don't think they believed me a year ago when I told them what it can do to me. My CA125 is 3.

Sorry for the essay, but while I know everybody is different, I would hate for anybody to base treatment on me, cos my body seems to be a bit more different to others, than is normally the case.

I hope that your mum finds treatment and painkillers that will work for her. You will find a ton of support an experience on these forums. In your pocket - I know how hard it can be.💗

I had another question about radiation to the spine. Will I end up laying face down naked with a sheet over me while they zap me? I was trying to figure out how this works.

I also need to vent. My dental xrays yesterday were good, the dentist filled out the form to okay me for zometa. As I was leaving the dentist, the office person was getting ready to fax the form to the cancer center. I messaged the cancer center later in the afternoon, and they hadn’t yet received the fax. How does this happen? Doesn’t a fax goes thru quickly? I can’t get a zometa appt until the cancer center gets the dentist okay form. I’m going to the cancer center today for the radiologist consult, so I will try to drop a copy of the form off at the oncologist. But why oh why can’t anything go smoothly? Why can’t the fax be sent, received and someone from the onc call me and say, “Mrs M, will next Tuesday at 10 am work for your for a zometa appt?” I am always doing so much leg work and coordinating just to stay on top of my different doctors medical appts, etc. It gets wearisome and it also causes me great anxiety.

Divine, for my thoracic spine radiation, I was laying on my back, on the hard-as-a-rock table. (The technicians helped me get on and off.) The radiation machine moves around you, it's massive and reminded me of something out of the Terminator movies. And makes that scritchy-scratchy noise like a geiger counter. Although I think you've had radiation in the past, so you're probably familiar?

I wish I knew of some magic that would make this all easier! It can feel like a full time job managing all the appts, and yes, a fax should go through pretty quickly!! Argh. The one thing that helped me was taking early retirement (I'm 54), which I know not everyone can or wants to do. And scones with strawberry jam, which I am having right now, trying not to get sticky jam fingers on my keyboard...

May today be a day of peace.

Thank you, everyone, for talking me down from the ledge! Today was a bit more productive. I dropped the dental form off with the onc nurse this afternoon before I went downstairs to the radiology consult. No idea why they never got the fax, but the nurse said my form was all she needed and someone from the infusion floor would be calling me to set up an appt.

The radiologist wants me to have targeted rads to the two spine areas, and so I have an appt next Tuesday for the initial set up where they take all the measurements with the MRI and fit me with the shrink wrap suit. The radiologist said they’d work up a plan for me which will take about seven to ten days and then they’ll call to set up an appt for the rads—-3 to 5 of them.

Then not long after I got home from Pittsburgh (an hour drive), a scheduler called and I was able to make the zometa appt for next Tuesday after the radiation appt. What a relief. I feel like I can relax at this point finally.

My other question if anyone can answer: I am wondering exactly how undressed I will have to get for rads to the spine.