Bone Mets Thread
Comments
-
A lot went down at Mayo this week which I will chronicle mostly on the liver channel which I consider my primary home, as my bone mets are minimal. However I had SBRT Proton therapy to treat the met in sternum and I learned a few things, so for those of you who don't visit the liver thread, this was my experience.
All my other mets, basically the mets in my liver, breast and lymph nodes, have responded to systemic treatments. The sternum mets persists at a low level through all treatment, so we decided to nuke it. I wanted to use protons to protect this sensitive bone and area. I am far from oligometastatic so there was some question whether it would be covered, but I have developed pain in the area so we presented the treatment as palliative. I prefer protons to photons because of the accuracy but its more expensive and it can be hard to get approved. They can stop protons at a particular location so that it doesn't pass through the body past the sternum. Some of my favorite organs are behind my sternum so I really wanted proton treatment. It turns out the insurance approves palliative radiation without approving the modality (photon/proton) without even prior authorization when the treatment is SBRT. Approval of SBRT may be easier because it's just one or two treatments. In my case, I had 25Gy to my sternum in one dose.
Radiation to the sternum requires stabilizing the head in a mask. The mask is very tight and your head is bolted to the table for 45 minutes. My sinuses are constantly draining into my throat right now after a series of viral infections. I did not notice it until I had to wear the mask which inhibits coughing and swallowing. I failed the first attempt during the prep phase because I was gagging on mucus. I came back 6 hours later after administering sudafed, benadryl and a nasal antihistamine and a couple hours of backbends and other yoga poses that drain the sinuses. I also took a sedative the second time. It very doable, but you can't have mucus dripping from your sinuses into your throat going on. You can't swallow and cough well. I recommend requesting a sedative because it's normal to panic at the feeling of having your head screwed to a table. It takes 90 minutes to kick in so it has to be planned in advance.
I hope this helps others getting anything from their sternum up. All this was a surprise to me. The issues can be managed, if you know about them. The second attempt, once we sorted everything out, was no big deal. But when I failed the first attempt I broke down in tears thinking I would not be able to complete the treatment. I ended up missing my final appointment with the MO in order to schedule the second attempt and I did not get my faslodex and zometa shot until 8pm, arriving back at my hotel around 10. It was a long day that I would not wish on anyone.
>Z<
0 -
Oh, Z....wow. I'm glad that's behind you. The head bolting and inability to swallow, etc, sound hideous and frightening...plus the fear that you wouldn't be able to complete the treatment. This is such good information for all of us. Thank you for sharing your harrowing but important experience. Try to get some rest now.
0 -
zarovka, wow, what an ordeal! Thank you for the detailed insight into getting your sternum zapped. I would have no knowledge of protons vs photons, so I found that very informational if needed for future reference. Yes, I, too, would need a sedative if my head were to be bolted down for 45 minutes. It was when I first began with the MRIs back during being diagnosed that I learned how claustrophobic I was, so I feel for you. I hope you've managed to get your equlilibrium back after this trip to Mayo.
Grannyof3, interesting that your 29 year old son has such views already on the health care system, and I admire him for it! Eyes wide open! So many people have a Pollyanna approach to it as if perky positivity prevents problems. As I said, we all need to be aware.
You asked: what do I live for? Certainly, my husband and my son, who was a senior in high school when I was diagnosed. It was wonderful to be around when he graduated college with honors! He lives an hour away, doing well. He works with my stepson, who is older, they both work from home as software engineers. Stepson has wonderful wife and they've given dh and I two grandchildren that light up our world.
I also want to add that I live for me! I still want to experience the ups and downs of life, see new places, experience new things, and soak in the appreciation for treasures that have been in my life for years which, along with my family include: living in the Ohio Valley, my home and yard, my cats, reading, walking, eating good food, and more. I still wanna live! I am not just here to take care of everyone else and make sure they have a good life. I want that for myself as well!
0 -
Thanks to all that responded to my question. It looks like my onc is on the same track as yours. It is nice to have this site where we can learn from each other.
0 -
Longtail,
Yes, it takes practice to stay in the moment, but I have started to act like my old self (before MBC) again. I know it’s kind of an act, but I’m laughing more and enjoying things again. It’s also easier because I’m on Faslodex. This treatment is so much easier than Taxol. I just hope it’s working (will have a scan in Feb.).
Anyway, I am also thinking about joining a yoga group. I’ve heard lots of good things about how that also has a calming effect. I can use all the help I can get!
0 -
Cure-ious, yours was a fantastic post about the mental game. It helps to be reminded of the fundamental belief that we are living with this disease, not dying from it.
Z, thanks for the information and update on how you're doing. I've got that mucus drain/throat clearing/cough thing going too, and can't imagine not being able to cough or swallow. Hoping you have easier days ahead.
Chef, I was misdiagnosed early on too. After months of treating my lung and chest issues as allergies and asthma, I finally had a lung function test that indicated I was at 47%. Even at that my primary doctor wouldn't refer me to pulmonology. I fired his @ss, got a new primary, and into pulmonology that day. CT a week later, and back into the oncology hallway I had left 10 years previously and believed I wouldn't see again.
Candy, my MO only orders bone scans every other set. CT every 4 months, bone scan every 8 months. It's a balance between knowing what's going on and over-radiating the poor buggers.
0 -
booboo - fake it till you make it as they say. seriously once your treatment plan is in order, and executing, denial is very healthy state of mind.
>Z<
0 -
Hi all wanderful ladies! I haven't posted for a while,because I was in denial,which Zarovka called a " healthy state of mind" . Absolutely true! Taking care for my new born grand baby was like soaking in a sea of love when you want to forget of the fear and worries.
Zarovka, i am glad that this hard day is over . Thank you for sharing your experience. We learn from each other how to fight. I wish you success with the treatment.
I am behind a few weeks, but tomorrow I'll catch up.
Prayers, love and hugs to all !
Elena
0 -
Phew, Z, that sounds intense. I've seen the masks before and found it hard to breath just looking at them. Interesting about the proton vs. photon therapy. I've got evolving radiation damage to the breast area we zapped.
I'm reminded constantly that we should pat ourselves on the back for all of the shit we endure. I realize we go through this because it's our life, but every now and then it just hits me how hard it all is. Much love to you all on this Sunday.
I'm heading to the pool today for a long distance swim, and then likely a nap. I'm working at home 3 days out of 5 now, and it's helping to ensure I get in my exercise consistently and helping with the weariness I've been experiencing. See my MO on Wednesday to discuss potential treatment changes. I'm expecting he'll suggest either removing Ibrance altogether (but I need to understand that I can absolutely bring it back down the road) or lowering the Ibrance dose to 100mg. I've been on the 125 dose for around 17 cycles.
0 -
Z- Sorry you had such a rough day! Hope the proton rads take care of the sternum and you begin feeling better!
Jen- Dealing with the 125 dose for 17 months is a big deal! Enjoy the swim
0 -
has anyone had the proximal femur replacement? I would love to hear from someone about the recovery period
0 -
I had Zometa shot on friday at maybe 8:30pm and then I developed moderate to severe flu symptoms the next day that lasted about 24 hours. Fever, chills, extreme fatigue. I had radiation as well on the same day. I've heard that Zometa can cause flu like symptoms ... Has anyone had experience with this? When was the onset, how severe, what symptoms?
>Z<
0 -
Oh, absolutely, Z. I felt like I had been hit by a mack truck after I had my first Zometa. Horrible diarrhea, too.
I've been fine since then. What one of the onco nurses said (AFTER the fact...) is to take Benadryl an hour b4 Zometa, and you should be fine. I have Zometa every 3 mos, so that's what I do now.
) L0 -
Hi Z, The first Zometa shot does that. You feel terrible. I take a Claritin the day before and the day of and don't have any trouble anymore. Last month's shot I forgot to take the Claritin and had no problems. I've ad about 7 shots. Had to skip a couple of months due to low calcium.
0 -
same here....first zometa was bad...felt crappy. It has not happened again. I have had 4 total.
0 -
Oh my word, Z. That mask sounds like a horror. I've had a cold and then the flu for the past month and I am pretty sure that I could not have pulled off what you just did. The hacking and coughing from this year's flu just goes on and on. Good for you for thinking of strategies like the yoga (brilliant, girlfriend!) and for going back into the torture chamber the second time. Glad it's behind you. Bravo on the response to immune therapy, too!!
As for Zometa... oh heavens. Yes. I had that reaction and more besides. My gallbladder went berserk in the days immediately following my first and only Zometa, and I wound up in the hospital. At that time (2013), I started a thread here asking if others had had gallbladder reactions to Zometa, and there were several affirmative replies, but everyone said they had wondered if there was a connection but had never had that confirmed. So take it for whatever anecdotal information is worth. Interesting. Anyway, on the chance that my gallbladder cannot take Zometa, my MO has nixed all bisphosphonates for me. I took Xgeva for a while before that Zometa experiment, but had to stop it also because SE's kept getting worse.
0 -
Here's another question for my bone friends. I've developed a pain across my upper back the top of my chest in front. The kind of thing that you might develop after coughing your guts out for weeks, which was in fact the case in December. However, the cough has resolved, the pain persists. It may be worse. I left for Mayo expecting them to find new mets in my rib cage, but they did not.
I don't know how to begin to trouble shoot this, or whether to try. With all the medical issues I have, if it isn't cancer do I care? As you know one can go to doctor after doctor for this kind of thing and be told that it will heal with time.
One thought is that it could be referred pain from the sternum met which was treated last week at Mayo. Do I have any hope that the radiation treatment will resolve this broader presentation of pain? If so waiting seems to be the thing to do. I am told that it takes 2-3 weeks to see a reduction in pain from palliative radiation. Is that true?
Any thoughts welcome.
>Z<
0 -
Hi Z. I think your estimate of two to three weeks for improvement is accurate and yes, I would think it is referred pain. I suggest you monitor and if it worsens or does not improve let your MZo know.
Someone (I think liver thread) called this the gift that keeps on giving and that is exactly what I have been thinking. I’m dealing with a new pain in my groin, not excruciating but very persistent. It may be mets in my hip which require zapping but I’ve just switched to Faslodex so want to give it time to kick in. The question is, do I reach out to my MO or wait hoping that it will resolve. Sigh... are we having fun yet?
Hope your sternum rads get the desired effect.
Hugs. Pat.
0 -
This is my 1st time on here. I need help and don't know where to go. I was diagnosed stage IV last June with widely metastatic mixed lobular & ductal carcinoma. I required no surgery as they could not find a mass in breast, but biopsy of bone came back as breast cancer. I have mets to skull, facial bones, sternum, clavicles, multiple ribs, thoracic/cervical/lumbar spine, left hip and femur. I was in excruciating pain when diagnosed. They first tried morphine for pain relief, have since tried other opioids but did not work, am now on Fentanyl patch with dilaudid for breakthrough pain and this has helped for the most part. My main issue is unrelentless nausea. I am able to eat very little. I receive IV infusions nearly weekly just due to dehydration and have lost 45 pounds since August. I have been on many meds for nausea, nothing is working - zofran, marinol, compazine, scopalopine patch, CBD oil. Today they started me on Reglan. The Ibrance which I have been taking since August is not working, my tumor markers continue to rise. My oncologist wants to take me off Ibrance and start IV chemotherapy (I don't know yet the name of the drug/drugs). I am terrified to start this, my fear is that it will make me feel worse than I already do. I don't want to give up, but I don't know how much longer I can go on like this. Please, tell me what has worked for you. I am currently hospitalized to try to control the nausea and for IV hydration, so I've spent my time reading so many of your posts while lying in this hospital bed. I'm amazed how many of you are able to live your life and enjoy life on some level, I want to be in the place. I would be grateful to hear from anyone, what has helped you?
Thank you in advance and I am genuinely happy for every single one of you who are able to continue day to day.0 -
blainejennifer and maire....thanks very much for answering. Blainejennifer the pain comes when I'm lying down in sleeping position for no apparent region but I haven't had it for the last three days and I'm beginning to think it must have been caused by stress, thanks to a friend undergoing problems who kept piling them onto me to solve for her! I don't usually get stress headaches and it was more in the temple to outside/orbital region than I would have expected a stress headache to occur but I'm sure that's what it was. I'm the same as you, I don't go looking for my results until my appointment day. I don't normally worry about them. The only reason I'm more aware this time is because it's a year since I started treatment and something in my head tells me that this scan might be important in telling us how the treatment is working. So far all scans have been stable so I think I'm just scaring myself for no reason!
Maire, thanks for your input - sensible as always. I'm on a trial and I know my MO or trial nurse will call me if there's anything untoward because they'll want to see me. My five weekly appointment is now only a week away and, as we had a long weekend for Australia Day this weekend, the results won't be in until towards the end of this week I shouldn't think.
Raisan angels....this is a good thread for you as you have bone mets and we are all very supportive and, collectively we have a lot of knowledge to share. I'm much, much older than you so I don't have the same issues but I do have a very similar situation with my mets. There are many treatments for ER+/PR+,HER2- cancer patients and your oncologist will be able to choose one which is right for you. You can survive many, many years despite being Stage 4, as some of the ladies here will tell you so don't give up hope. We will all hold your hand and help you to be less afraid. You're very wise not to look at websites. That's also been my personal decision because statistics can be scary and do not apply to everyone. I think there's also a thread for young women with Stage 4. If I can find it I'll post the link for you.
0 -
KJoelFromLB ...it is possible it could be Fentanyl causing nausea, although yours seems terribly extreme. I use Fentanyl patches, 37mcg per hour, changed every 72 hours and do have some nausea but nothing like yours. I wish I could offer you more by way of a solution. My other pain meds are Tramadol and Targin, which seem not to cause me much trouble. I've been on Ibrance and Letrozole for a year and my tumour markers are very high and remain high, bouncing around between 450 and 520 each cycle. My oncologist doesn't place significance on TMs unless it goes higher and keeps going higher. He relies on scans three monthly. I doubt I've been of much help at all but I wanted to reach out to let you know I'm sorry you're going through such a harrowing time. Keep us posted on how you're going. The ladies on this thread are sure to have ideas and are very caring xx
0 -
Raisan angels.....in case you haven't discovered this forum for women in their 30s
0 -
KJoel, the only thing that helped with my nausea when I was first on chemo was Emend. You might see if you could try it
0 -
hi my name is Judy and I live in Aust. I have a similar diagnosis. R u in Aust? I take Targin 15mg and 5 mg endone twice per day and that with a couple of panedol helps keep pain under control. I went from 38 hours to working 15 hours so I only do 3 /5 hour days as my back doesn't cope . How are u feeling atm as I notice your post was a little while ag
0 -
KJoel, I don't have the nausea issues and so can't help there, but I wanted you to know that I am thinking about you! Has your doctor confirmed with scans that the Ibrance isn't working? Sometimes tumor markers don't tell the right story. And what about Verzenio? Has that been mentioned as a possible future option? Good luck with the nausea, my friend, and I hope that it will be proven ultimately that Ibrance is, indeed, doing its job for you and kicking those little suckers' butts!
0 -
Z how did your experimental treatment in Oct go? Have u had a sternum re occurance? Just wondering how u r going as we have had a terrible heatwave here and I haven't been on the boards since xmas. I have completely revamped my diet and exercise program and I feel a lot better. I had put on 5kg this year with comfort eating and too much food so I have put myself on a low dairy low sugar eating plan with 30 mins of exercise per day and 1 hour meditation /relaxation and the benefits have been huge. I have less sweats, more positive mood and I have lost 2kg of bloat and fat and less aching in my bones. I definetl will try to keep it up. Hope u ladies have a great week Judy xx
0 -
in Aust we are given Denosaub which I don't really have any side effects. The other day I made the mistake of having it before work then I came home after work cooked dinner cjeanrd and walked 3.5km. Big mistake!!!! I had severe fatigue and cramps in my legs 1/2 night and had to take the next day off work. Do u have access to that drug in the US?
0 -
Z, I'm guessing your pain is from being bolted down on the table. Did your mask cover the top part of your chest? It fits very tight as you know and can cause that discomfort/pain. My mask went from head to mid chest and that pain resolved when rads were completed. Yes, there is usually some relief from the radiation after a few sessions. How many are you going to have? Zometa can cause flu like symptoms as well. I've been on it for many years now and I don't get the hit by a Mack Truck feeling anymore. Be sure to ask for the infusion in 30 min or more. Makes a big difference than getting it in 15 min. as far as SE's go. Hope you feel better soon.
0 -
Do many of you have bone mets plus other sites? Lung liver nodes? Is the treatment much different if you have all over Mets? I look forward to being an encourager on here but now I’m just so full of questions? One day you’ll see I’m a warm loving kinda funny woman;) now I’m a little freaky tho...thank you to all that have responded, it means so much to have a group of people who get it:) I hope and pray you all have a good day full of love:)
0 -
chef, I deal with bone mets only so far, so I can't answer questions about mets to other areas. I'm here to say, tho, by all means allow yourself to be freaky about this. We don't care if you are a warm, fuzzy woman, (we generally just assume everone is).....right now you are getting a crash course on metastatic bc, so please don't be worried about how you come across. Put your energy into learning and understanding what is going on with you. Ask as many questions as you like. We all understand, which is just one of the reasons this forum is so great.
0
