Bone Mets Thread
Comments
-
Congratulations Babs! thanks for sharing these special moments with us! You're never going to want to leave Paris! The joy babies, especially grandbabies, bring is the best medicine!
0 -
Looking for advice/reassurance. In July I was disgnosed with mets to my left sacrum and coccyx. I had a stress fracture on the left sacrum caused by a lesion, which turned out to be a blessing because it led to my diagnosis. I had my ovaries out in August and started letrezole and Ibrance in September - my only side effects have been mouth sores. For about a month now I've noticed a “sensation" on my right side. It doesn't hurt at all, and comes and goes. It doesn't feel anything like the last time. i don't need anything for pain like last time and it's super inconsistent. I'm going to Dana Farber for my monthly check up so I'll mention it to my MO but my questions are: has anyone felt this before and it was not progression? I was so hopeful Ibrance would work! Also, if it’s not working, what would be next? Does Ibrance take a while to start working?Ive been so anxious about it the past week
0 -
Metser-mom. I can only tell you about my right side achiness. It is intermittent and started with cycle 1 Ibrance/ Letrozole. One year later, still have those strange aches. My MO ruled out liver, gall bladder issues and the GI ruled out any concerning GI issues. MO suggested that the meds that I am on (have chronic constipation) is causing a little sluggishness between my ascending and transverse large intestines. As always, seek medical advice as I am just relaying my personal experience.
0 -
Maire, great news from your recent scans!
Babes, congrats on your beautiful new family addition. Joyeux Noel!
Swess, your #1 job now is to put yourself in the best position to battle this disease. Forget about standard convention now, and do what you can to reduce stress. Good luck.
Metster, is the right side sensation more bone focused or soft tissue (if you can tell)? My first three months I had a few phantom pains. One felt like a stitch in my side. Others were definitely bone, sternum and rib pain. One scan showed rib inflammation but has since resolved
0 -
Jaylea - it almost feels like I pulled a muscle, like a hamstring. It hasn’t bothered me at all today. I’m hoping I’m just being hyper focused on it and it’s nothing. Fingers crossed
0 -
Metster-Mom - Letrozol or hormone suppression alone can do that. OMG the weird muscle aches. A part of me was grateful that I had progression so there is no question I should stay on that stuff. Keep moving even if it is a brisk walk to get the metabolites of these drugs out of your system asap.
>Z<
0 -
Thanks booboo and Maire....things are much better now with my husband. He's trying really hard to get it right and find a balance between wanting to be with me but knowing he wears me out. We still get on well and can chat away which is nice and now that he's in a better place he doesn't mind if I tell him I'm tired so not to come this week or ask him not to stay long. I think we've got things worked out quite well now. It's nice of you both to care so much.
JFV....I don't think I mentioned my Fentanyl patch. I've also found it works well. I had to up my patch from 25mcg/hour to 37mcg/hour recently and noticed the difference immediately. I feel like a real druggie with that and Tramadol and Targin but I tried dropping my Tramadol (200mgm per day) by 50mgm for two days last week and paid for it for several days afterwards. Last night I accidentally forgot my Targin dose and I'm paying for it today so obviously I had the balance about right until I upset it. I keep thinking maybe I can start weaning myself off something but, as the tumours have not regressed at all, that's silly thinking but I'm known for being hard on myself!!
I'm enjoying living in my little apartment and having time to myself. I find I like it more and more. There's very little cupboard space which means a pared down lifestyle and I like that. I'm fortunate, though, that my husband and I are on good terms because we don't consider ourselves as even separated but are as married as ever, just living apart, so I can keep my books and winter clothes (it's summer here now) at home and get my husband or son to bring anything I want. I'm also quite pleased with the two of them because one of the causes of my unhappiness was that they disrespected the lovely home (stress on home) I made for them by trashing it and leaving all their things lying around. As I was lying around too! guess where my gaze was always directed...on the mess I couldn't clean up. I've told them I don't ever want to see that house again because it was no longer the home I made it for them and they seem to have taken that on. Because they want me to go back sometimes they've started a serious clean up campaign! Sometimes men need a sledgehammer approach!!
So from now on Leapfrog is going to be all positive and uplifting again with no more tears or complaining!
Babs...your little grandson is just gorgeous. It's a shame you didn't make it in time but now you get to cuddle him all you want. Congratulations. I'm so happy for you and your family xxxxx
Hugs to everyone
0 -
Yes god is good. This grandson is filling my heart with love. Yesterday he slept on me most of the day. I was in heaven! His other grandma came in from Strasbourg to meet him. Shes such a wonderful woman and loves my daughter we’re blessed
Babs
0 -
Thank you leapfrog. I went to a pain specialist. He's starting me on Methadone. He says it's the least likely to cause what I call "wooo hooo" symptoms. Wish it was happy wooo hooo. But, no such luck. I'm glad you are settling in and enjoying your new home.
Tomorrow is an MRI for my skull to see if my SBRT treatment worked. Hopefully I will also get an MRI of my spine. If I have sciatica he can give me a steroid i
0 -
has anyone had any experience with spine compression fractures. I am getting Xgeva shots...one so far with the Faslodex and ibrance. Do they heal?
0 -
schoolmom.... I have at least two and as far as I know the actual fracture heals but the compression to the spine remains.
0 -
what does that mean
0 -
schoolmom...It's hard to explain without using gestures the way my oncologist explained it to me but it means that the stress fracture where the tumour forced the bone to have a hairline crack will heal, so the actual bone will heal but that past of the spine has lost the cushioning where the fracture occurred. I can't explain it better than that those two parts are now pressed together rather than slightly apart. I don't know the terms for this so I'm trying with words to describe what my oncologist told me by holding two fingers apart, denoting how the area was and then by putting them together to show how it is now that it's healing!
0 -
got it.....thanks
0 -
Babs, Congratulations for your precious grandson! I now exactly how happy are you, because one day later I was holding in my arms my grandson.
My heart was overflowing with love. Here is him with grandpa
0 -
Oh my another gorgeous child.
>Z<
0 -
Blueshine! Congratulations!!! Another beautiful child!!! They are just incredible blessings
0 -
Kellie, most people with bone mets only do very well for a very long time. And yes, bone mets alone is seldom the reason someone dies of mbc. I have seen some recent research stats that say bone mets alone is becoming more like a 10 year survival expectation, depending, of course, on how well you respond to tx. And who knows that new breakthroughs will happen in the next 2, 5 or 10 years? So you have every reason to be hopeful, and if your onc hasn't communicated this to you, you might want to be do a check on the degree of positive encouragement you're getting from him or her, which can be a huge factor IMO in expectations and the mind-body connection.
Just about any metastasis beyond the lymph nodes is considered Stage IV. While bone mets only may not be immediately life-threatening, it pretty much does require on-going systemic treatment to hopefully keep it contained to the bones. So, from that aspect, it's very different from being Stage III re. the basically forever tx required.
Blueshine, congratulations on your beautiful grandson. Babies are truly life's greatest blessing, and seeing the beautiful new grandbabies here is so heartwarming. What's this little one's name? Deanna
0 -
Blueshine. What a beautiful baby!!!! How lucky are we to be around to enjoy such a special moment. These beautiful grandkids are what’s special in life. As my people say Mazel Tov!!!!
Babs
0 -
Blueshine. What a beautiful baby. So exciting to hear about you Grandmas. May both babies be blessed with long lives and much joy.
0 -
Blueshine ....congratulations on joining Babs with a beautiful little grandson. It's so good to see these precious babies.
dlb823....thank you for your very succinct explanation of bone only mets. That's what I have but they're extensive. I was told by my oncologist a very similar explanation to yours but it's good to have a refresher course because it was more than a year ago that it was explained to me, a very eventful year and your explanation is very reassuring. I've been optimistic and positive all along that my treatment will keep the mets under control and I'll continue that way.
0 -
Finished 4 of 10 spinal IMRT and today machine is broke so cancelled. Feeling so much pain relief quickly.....Enjoying sleeping in from 7 am appts. But looking forward to pushing through 10....
0 -
To all you wonderful humans, some help/advice needed for a concerned son:
Spent six hours yesterday getting bounced from MO to radiation oncologist to pain specialist with my poor mom. Some of you know from other threads that she's receiving a Keytuda/Xeloda combo. Third infusion was yesterday and first scan is a week after the new year.
Since her dx in late October (ER-PR+Her-2-: mets to bone (small mets pelvis, rib, skull, tumor related C6 compression fracture in neck), lung, liver). The pain related to my mom's neck fracture has gotten exponentially worse. She has graduated to fentanyl patches, a nerve blocker, norco for the pain gaps, all in a couple months. It's just madness. She's essentially bedridden.
Yesterday, the radiation oncologist suggested radiation to the spine mets for one week to alleviate her pain (and I'm not sure why the hell this wasn't done before she started tx. I suppose it's possible her slot in the clinical trial could have gotten snapped up but come on). In each department we visited, the implicit remarks from the docs were that her symptoms/worsening pain suggested progression, which would obviously be a blow. Palpation to the spine by the radiation onc didn't cause her pain, it's her right arm that gets stabbing pains radiating from her right shoulder blade.
Granted, we have CT in a couple weeks to see what's really going on, but my hope is that the worsening pain isn't the result of fast growing tumors pinching nerves near C6, but just brittle bones and a bad neck fracture. Her voice is also extremely hoarse, suggesting a lymph node might be pinching a vocal cord nerve.
Long story short: come scan time, what are we looking for? I've heard some IO's make things a bit worse before they get better due to immune cell recruitment to the tumor site and inflammation resulting therefrom. Has anyone in the thread had chemo that worked while the bone met pain became infinitely worse despite a lower tumor burden from chemo? Has anyone had tumor reduction on more distant mets sites while showing growth in a bone met? I would assume this is possible because of tumor heterogeneity, but who knows.
Happy Holidays to all of you and your families; I asked Santa for a cure, but I think I had a speeding violation this year so we'll try again in 2018.
-Jeff
0 -
Jeff - I don't have that kind of bone issue yet but I am praying for your Mom. I do agree that pain can come from many sources. We had a lady who had terrible joint pain and suspected progression in the bones and found it was an infection of her kidney. Also its very early to expect a response from the new treatment. Others will chime in soon with answers to pieces of your puzzle but you are basically floating in a great sea of unknowing with a lot at stake. None-the-less keep pulling strings and learning and you will find things that help.
>Z<
0 -
Hi ThunderJeff, I am sorry about your mom. I can only give you what all this means from my personal experience. I am sure other's may have different thoughts.
My mets are located in a number of bones, liver, and some question regarding my lungs but we won't get into that. I did have radiation to the T1 area at the base of my neck as well as various other areas. Pain relief was significant. I did have some side effects to the radiation like sore throat, mouth sores, and chest pain for a little while but I could deal with that.
The major met at T1 eventually did completely collapse and caused major pressure on my spinal cord causing loss of feeling in my hands and arms. I have mets in T1, T3, T4, T8, T9, lower back, right hip, and pelvis. My MO sent me to a orthopedic surgeon for consultation due to T1 fracture. The surgeon did not want to do surgery because of my diagnosis. He was not very well versed in cancer and assumed I would soon die and he felt it was cruel to put me into that type of surgery and recovery. Basically he was exercising his belief that he wanted to assure I had quality of life. Unfortunately my function began to decline. Long story short, there came a time where we had to decide what we were going to due since T1 had completely collapsed and the bone fragments were pushing into the spinal cord.
Long story short, I politely smiled at him and stated that based on all of the new cancer treatments that were now available and were currently in the pipeline my "time" prognosis was anyone's guess. I even told him that there were a number of ladies on this board who are 5 years or more out from their diagnosis. I got my surgery.
Pain isn't always indicative of progression. Pain is caused by many factors. Those factors could included swelling, muscle pain from holding a body part in a particular position to avoid pain. Heck, even shaking caused as a side effect from the pain meds can cause muscle tightening resulting in even more pain. For the providers to simply put out there a blanket statement like this is irresponsible. Without imaging or labs to back up that statement, please look at it as nothing more than a statement. Facts matter.
I am praying your mom has pain relief soon.
0 -
so I’ve made a decision that I’m at peace with, but there’s still a small worry I’m hoping you guys can advise me on. I’ve decided to apply for STD and see how I feel after some time off before I decide to return to work or go SSD. what if my doctor doesn’t think it’s necessary? My biggest problem is that I’m always so so tired.
0 -
Swess you have to decide what is best for your health and stress level right now. I have been using sick days since 10/26 due to gall bladder surgery and now all this. I had over 100 days so I was good.
I thought I would return to my school after Christmas but decided not to yet.
I am going to continue using days and do LTD starting 1/24. I am exhausted just finishing round 1 and I also do not want to be exposed to 800 pk students germs in January and February. Not worth it
My doctor is indicating back pain and treatment for paperwork...,he has no issues with my decisions which technically is our decision.
Then return 3/20 after spring break, still have 10 sick days to use for the last 53 days of school.....then Retire!!!!!!!!.
We all have to come up with a plan for ourselves.....it will help you in the end deal,
0 -
Good morning, ladies ... whew!!! Got diagnosed with bone mets in October and just finished reading 674 pages of this forum! Learned so much from just reading and digesting your comments and tips. I have diffused mets (bone only) after a 23-year break from my original diagnosis. Still processing but feeling more comfortable as I still sort of cruise the river of DeNile. Started Kisqali and Femara in November with infusions of Zometa every 4 weeks (have had 2 so far). No SE's at all from any of the treatments; the pain in my hips and ribs is virtually gone, but, as you know, every little twinge makes your head spin. Won't know if things are working for a bit. TM's were very high when I started, so anxious to see if they are a true indicator of my progress. Love to all of you and keep well.
Kathy
0 -
Kathy, Welcome to the Bone Mets thread. I am sorry that you have reason to join us, but as you already know, there are many wonderful, supportive people here. I am amazed that you read all 674 pages here. Impressive! I am happy to hear that you are not experiencing any SEs from your treatments and that the pain is disappearing. I hope that you see a good response to the meds and that your current treatment plan remains effective for many years. Now I have a questions for you (an easy one). How do you pronounce Kisqali? I have wondered about that since it was approved.
Hugs and prayers from, Lynne
0 -
Swess - what your doctor thinks doesn't matter. All you have to do is give them documentation of your diagnosis. MBC is in a category of disabilities where there is not judgement call on the part of the doctor as to whether there is a disability. It's a decision you can reverse without issue.
Praying for the day when MBC is not on that list of automatic disabilities ... it's a pretty tough crowd.
>Z<
0
