Bone Mets Thread
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I can't help with any practical information or answers to the recent questions but just want to say the support and info being offered in the thread is great and you all deserve a million thanks. Also great to see that good outcomes are possible after fractures and other painful bone complications.
Love and healing to all
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Great advice ladies for those of us struggling. Moth I basically follow what you’ve said. I also feel that this is now my ‘job’. The effort involved in just looking and trying to feel ‘ normal’ is just huge…..and we all know that!
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RK 2020 and anyone else that has had surgery
My onc has had me off my medicine for 2 weeks. I called for my Faslodex shot and they said I couldn’t scheduled as they had to call onc. They said she has me off it because I am having urgency. I said but my surgery is Sept 9. Did you have to go off you medicine. I am getting nervous it is too long
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Positive2strong,
In December 2019, I was Dx with MBC on several lymph nodes (thorax, interbronchial, left axillary), lungs (2 solid metas on right lung), liver (segment 2, 5, 6, 7 and 8) and bones (right hip, left shoulder and sacrum) for the most active metas. I was in a wheelchair since november 2019 due to the metastasis on my right hip and had daily injection of Lovenox (anticoagulant drug). I was prescribed with Ibrance (125mg in December, 100mg in January), Anastrazole and Zoladex (I was 40 years old, not in menopause).
I had surgery for my hip (removed and replaced 02/06/2020), then radiation (04/6/2020). I stopped Ibrance 2 weeks before and Lovenox 2 days before my surgery but go on with Anastrazole and Zoladex. I was worried to be off Ibrance but the onco told me that Anastrazole and Zoladex still protect me. I don't know for Faslodex shot. I only restart Ibrance on 05/29/2020 with 75mg (3 weeks on 2 weeks off), so quite a long time after my surgery and radiation! I know 2 other women who stopped Ibrance 2 weeks before and 2 weeks after a surgery.
I was prescribed with Xgeva + vitamin D/calcium meds after my surgery on 03/31/2020.
I have pet scan every 3/4 months and monthly blood tests.
The metas on liver and lungs were inactive 4 months after the anti aromatase meds (4/17/2020 pet scan).
My metas on hip was inactive 3 months after the radiation (07/15/2020 pet scan).
My metas on several lymph nodes and sacrum bone were inactive on 10/07/2020 pet scan.
I still have an active meta on my left shoulder and I wonder if I will ask for a radiation (next pet scan mid september 2021).
I am fine now, I slowly recovered my energy and don't have too much side effects with the meds (I am still on sick leave).
I realized that I didn't love myself enough and felt insucure, that lead me to work too much. I try to change now.
Hope that you will find your own answers and solutions.
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Lili75
Thank you
Sounds like you are in a good place now and having good healing results.
I called again today to see if I should be getting my second shot of Faslodex before surgery and they said they will give the nurse my message.
I appreciate your comments. Wishing you continued good news
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Ladies on Xgeva - does anyone get side effects for the first day or two after the injection? I am used to a creaky pelvis and leg fatigue the rest of the day after an injection but this month for whatever reason I have had 2.5 days of side effects including leg weakness, burning leg muscles, every joint in my body feeling inflamed, and fatigue. So so much fatigue. Tried all my tricks including a clarityn, ibuprofen, hell I even exercised this morning (lightly, on the bike) and stretch because that can usually break a fatigue run. Nope - felt like i had the flu. Gave up and went to bed and ordered a Covid test just in case (no headache or fever, though I got some chills). But now this evening I am feeling better and sitting up so I dont know whats going on.
This is my last monthly injection and I go to three-monthly now but I cant say I have experienced side effects this bad before!
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I love the idea of us all meeting up, I'd have to join in via zoom or some similar platform, but I think it's a great idea.
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SondraF - I have had about 4 injections and do not get SE's from Xgeva. Hopefully it will be better when you move to every 3 months.
Lili75 - such an inspiring realization that you found you didn't love yourself enough and that led to working too much. Good luck on your journey to nurture self-love and making changes in your life! It really does help! ❤️
NKB - thank you for your insight on the mouth wash while starting Afinitor! I also will likely start with Exemestane.
Anybody have additional recommendations that is or had been on Afinitor and/or Exemestane?
Woodlands - So sorry about your denovo diagnosis but very glad you found this group! I do not post a lot but always find support, positivity and a deep wealth of knowledge here. I also am planning to start Afinitor in 2 weeks. Before I start we are trying a longshot to review the original tumor of 2015 to see if we can learn anything from that for a more targeted therapy. Current mets are not safely accessable to get a sample to biopsy. Good luck! Hopefully we will follow JoynerL and have a long run with low SE's!
JoynerL - I recently started cruising! Left our jobs last year, sold our house and moved close to the San Juan Islands. Bought a Ranger Tug and have been really loving exploring the islands! We are headed for a South Puget Sound cruise tomorrow. Can't wait!!
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Perky- one thing about Afinitor is that it can cause blood sugar and cholesterol issues- so diabetics do have a harder time with this drug. My blood sugar went up a lttle, but, never abnormal. My cholesterol also went up, but, did not need treatment and went back to normal when I stopped the drug. I've heard of people having GI issues- I didn't get those though. The exemestane did not bother me like the Arimidex and the faslodex had- not sure why. good luck!
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Perky-
My next treatment after Xeloda is likely to be a AA, too, so I'm very interested in whatever guidance you receive on this string! And I love, LOVE Ranger Tugs! We were docked in a slip next to one somewhere, can't remember, but it was on the East Coast, and really enjoyed looking at her. They're so well-planned. And great looking. I wonder if it was you all! We have a Grand Banks Eastbay and have loved cruising on her.
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NKB - thank you for the additional info on SEs. I am also not diabetic but did you do anything different with your diet for the high glucose, cholesterol or potential GI issues? Wondering if I should proactively make some shifts. So glad to hear Exemestane was easier for you than Arimidex. I really felt unsafe crossing the street I was so off on that!
JoynerL - LOL, I think our next boat will be a Grand Banks! They are such beautiful boats and so much roomier! Though we love our Tug for just the 2 of us. A good boat learn the ropes so to speak. 😅
Wondering if you would go back to a CDK/AI after doing Xeloda ? I remember someone here posting their Onc likes to go back and forth between Chemo and CDK or maybe it was just between Chemo and AI?
SondraF - hope you are feeling better!
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Sondra, my MO moved me to 3 months, after 12 cycles on bone strengthener (zometa and then xgeva), but I still experience se, sometimes side effects are more noticeable, sent me to bed for a couple of days. Make sure you take daily calcium a week before and after injections. I sometimes forget to take calcium- my MO is fine with that- but near injection I am more careful.
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Ah interesting to hear - I do take daily D3 and Calcium but I have never had problems like this before. I thought the nurse pushed the injection rather fast this time, however, maybe that has something to do with it. Or hell its Covid :P I am feeling better today and less achy after a good nights sleep so that has been positive. Ill take a walk later this afternoon to get moving a bit and see how that goes.
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SondraF, I don't have any SEs from Xgeva. I do it at home - well, I get my dd to do it for me lol. Just had it last night....
Is there a point in time we're supposed to change frequency or is it based on your bone density or what? I've been on it about 7 months I think, every 4 weeks.
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Moth- I have been on Xgeva since my diagnosis. My last MO said after 1 year of monthly, then you switch to every 3 months. When I moved to my current MO she kept the every 3 month regime.
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ok, good to know, candy! Thanks!
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Perky- although I love sweets, I do try to limit them and I think I was even more careful while on AA. I asked my MO to do a HGBa1c as well as the routine fasting blood sugars that the drug inserts request. It looks at averages over the previous 6-12 weeks vs just the fasting of that morning. I do know people that went on keto diets with piqray which really messes with your sugars- I did not do that. I also walk a lot which helps sugars. ( I have never been on piqray so can’t personally compare the two
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on the topic of bone strengtheners I have been on Zometa for 4 years every 3 months and my MO recently stopped it saying that it wasn’t known how long we should take it since people didn’t used to love so long with bone Mets. ( a recent bone specialist lecturer said the same thing about how many years to take it) she said the risk of jaw necrosis while small increases over time. I stopped it a few months ago - anyone else get this advice
( I took 6 doses before the bone Mets to try to prevent bone Mets before MBC as well- years before MBC)
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Nkb.....I got this advice too. I was told we'd stop after 2 years for the same reason.
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Re Xgeva I haven't heard a timeframe from my MO when this needs to be stopped. I would like to hear from others on this subject. Next month I'll be on Xgeva for 2 years. Thanks in advance.
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I have been on Xgeva 4 years now. I had read/heard on a breast cancer conference that 5 years is max. That, as Nkb said, metsers didn't used to live as long. I do have a local friend with bone only mets that has been on it over 5 years. Something to ask my MO.
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My original MO put me on quarterly Xgeva after one year. I went off completely in January 2020 for dental work. The new MO office doesn't believe in quarterly Xgeva for some reason and wants to resume monthly whenever I'm ready. I'm not in a hurry to resume but that's just me. I was on for over two years and now off for 19 months. I do need more restorative dental work, so far all that's being done is “putting out fires" in my lousy, rapidly aging teeth.
** slight correction- after my first six months my infusion schedule changed to every three weeks and then my Xgeva was given every six weeks to avoid an extra trip to the cancer center. And six months later, quarterly. New onc would also do a six week schedule but not willing to doquarterly.0 -
I get Xgeva every 4 weeks for 3 years now, no noticable side effects. I will say, your body knows when you need to rest, fatigue is your body telling you.
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Joyner, I will probably switch to AA also since the Xeloda is failing me. My MO hasn't responded to the MRI that I had done last week which shows progression. This is a long time for her but I know she is also waiting on a biopsy report so perhaps she is just being thorough. I will nudge her if I don't hear by tomorrow. Glad to hear you are still cruising. I watch the boats on the bay out our living room window every day. My DH and I used to sail a lot but he has developed bad knees and has given it up. It is too difficult for him to bend and switch sides constantly and I can't either. We are both certified and enjoyed it. We have discussed using a boat with an engine, but it is not the same.
Nkb, I have been on Zometa for five years (since the beginning of my DX.) I will ask if I should go off of it when I speak to my onc next. I don't have any issues with it except for minor fatigue the next day. I do request a longer push every time...at least 20 minutes. The nurses are usually fine with this. I also take Claritan the day before.
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I was on Xgeva monthly for a year, then every 3 months for another two years. In April my MO switched me to Zometa every 3 months. He said that the short term data for Xgeva was better compared to Zometa, hence his initial recommendation to put me on it. He and everyone else assumed that it would be just as good every 3 months, because Zometa is, so he lengthened the time between the shots once the mets became quiet. However, there is no actual data for Xgeva every 3 months and recently he became less certain that it’s as effective as the monthly regimen. He suggested either going back to monthly Xgeva or switching to Zometa every 3 months. He said that Xgeva has less long term data, and the data he had seen suggested slightly more risk (ONJ and spontaneous fractures), but didn’t have a strong preference either way. I opted for Zometa, because I’d rather not have to go in every month if I can avoid i, and the 20 minute infusion adds very little extra time to my quarterly visit.
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I was on Xgeva every 6 weeks (given at every other Herceptin infusion for ease of scheduling probably) for about 2 years. My bone met had remained stable during this time and I was taken off Xgeva having “received max benefit”. About a year 1/2 later, that stable met became active again and we restarted Xgeva in combination with a treatment change.
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Ah yes, illimae, you've reminded me, my “monthly Xgeva" was also every six weeks to coincide with the Herceptin schedule. And current MO would also accommodate that,I may edit my post to reflect that.
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I started on Xgeva every month early on. At some point, my onc changed to every 3 months. After hypercalcemia in 11/18, she went back to monthly which is my dosage now. I have no noticeable SE. I expect, but don’t know,that she’ll keep me on it as a protection against hypercalcemia
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IntoLight-
20 min to push the shot in? Is this accurate or a typo? Seems really long.
Have you tried a power boat….maybe you should. 😏 Lots of older sailors have gone successfully to trawlers. We sold the Sabre power boat (brought back from Wisconsin) to an 80-yr-old former sailing couple.
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I get Zometa quarterly. Two out of 3 oncologists said we would visit the topic of whether to continue or not at 2 years. Are you wondering what the third oncologist said? Nothing. She said nothing. And that is one of many reasons why I have decided to stop going to her.
P.S. I love Ranger Tugs. Not familiar with Grand Banks. It looks like I’ve got some internet surfing/dreaming in my future. 🛥 Enjoy ladies!
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