Bone Mets Thread
Comments
-
Jeenee thanks for the encouragement. Interesting,, my Oncologist wants to put me on the kisquali affinitor and third drug combo that you spoke of after Xeloda.
0 -
Hi Jeenee...thanks for your comment. My stress fractures sound minimal compared to yours! You'd know all about the pain. Mine are also lumbar and thoracic. The worst part for me was when I was cracking ribs almost every time I moved. Even drying myself after a shower was a dangerous undertaking, as was getting out of bed or reaching for something slightly too far. I'd hear that ominous crrrack and know pain was on its way but I'm past that stage now. Letrozole, Ibrance and Denosumab have done a great job already. The spinal cord compression has given me the worst posture! I try to straighten up but I just can't. I keep working at it though as I don't want to be one of those old ladies who are so bent they can't take in the sights of nature around them. I feel so sorry for them. Do you mind if I ask what the new systemic treatment is to be?
0 -
Z, bone is considered tissue and therefore can be used to determine your ER/PR, HER status. I had my hip bone biopsied when first dx with mets and the report returned included ER/PR, HER status.
Hope this helps.
0 -
Hi .Leapfrog,
Agreed - the ribs can be the worst and there seems to be little that can be done about them. Fortunately, they heal eventually.
I am starting eribulin (halaven) this week, as part of a clinical trial which may include Pembro, a type of immunotherapy. It's getting tough to move around and I know there is bone progression going on. Liver, and skull mets -near the brain - are the doctor's main concern.
just had my pre-trial liver biopsy today. Check that box. Can't wait to get started Thursday!
0 -
Jeenee.. you had liver mets in 2007? Is that correct? You are my hero.
0 -
Wow Jeenee is that true liver mets for ten years? If it's true maybe I will be around for a grandchild or two
0 -
Jeenee...you give me so much encouragement to think you've had mets for so long and so many different treatments. I'll look up the therapies you'll be starting on. In Australia, we don't seem to have access to so many therapies that I haven't heard of them but I need to know. Ibrance has only just become available for purchase but the price is through the roof. I was fortunate in that I was given the last place on a trial Pfizer is holding to try to convince the Aust government to make it more cost available for us over here. So many women are unable to afford it and, until now, they've had to go overseas every three months to pick up supplies. It's unbelievable that in this day and age women are mortgaging their houses to gain access to a drug that's been available in 52 other countries for a few years now. And they say Australia is a First World Country. Don't get me started! If I could accomplish one thing it would be to make it known that drugs are being withheld from women who need them yet, at the same time, the govt is boasting that stats on breast cancer mortality and morbidity are coming down.
To see your story has given me so much heart. Right since my diagnosis I've been completed optimistic and positive. Now I'm even more so. Thank you so much and I wish you well on your new treatment. From my heart to yours
0 -
SandiBeach -
I think that must be a typo in my profile. Bone mets started in 2007 but it was a couple of years before the liver mets showed up - 2013. I am sorry for the misinformation. I'll edit my profile. They have been slow growing until a recent progression while off systemic treatment for a while.
-JeeNee
0 -
Thanks Leapfrog -
I am frustrated to learn of the problems you have accessing your medication in Australia. There is no logical reason for the high price. That medication was designed so women like us could live with quality of life. It should be accessible and affordable.
Is there a social worker at your hospital or clinic who could help you look into ways to seek financial assistance.
I really hope there will be a change in your situation soon.
-JeeNee
0 -
Wendy -
I must apologize again for the typo. Have been metastatic since 2007. Liver mets showed up 2013 - so still 4 yrs. They have been relatively slow growing until recently. Bones have been more challenging - in terms of functioning, but I have learned to adapt.
-JeeNee
0 -
Jeenee...thanks I'm ok because I'm in a trial so I'm given my drugs and all my scans free. It's for other women that I'm concerned.
It's also possible that the drugs that you girls mentioned are available through other trials in Australia but I'm fairly new to this game so perhaps I don't know about them.
0 -
Lwrite--I haven't been following along with these posts as quickly as I would like. But I'm reading your post about possible trigeminal neuralgia with great interest. I've been trying to get to the bottom of some symptoms since March. My March brain scan was clear, but my symptoms really ramped up. I had another scan in October that showed two brain mets, but it's unanimous among my doctors that they aren't causing the symptoms (I'm still not 100% convinced). Would love to compare histories offline if you're up for it.
0 -
Jeenee. I will just rephrase my statement to " bone mets since 2007!". Wow. Still my hero. I plan to be here a long, long time.
0 -
Love this! I'll be looking forward to sharing stories of a good life.
- JeeNee
0 -
i had this done with hip biopsy too
0 -
Jenee so excited to read your post and see how long you have had mets!!! A quick couple of questions . I notice u haven't been on Femara or Letrozole which is often first line of treatment for bone mets and u are on kisqali which has just been released here in Aust and I was wondering how u were going on yhat
0 -
Hi Delvzy -
I have been on Letrozole. Guess it isn't listed. I'll change that. Doc found that I had a mutation that was causing cancer to grow in presence of the letrozole so he took me off of it. While I did try faslodex years ago, it did not seem to work for me. If at some point I try ibrance, I will try faslodex with it.
-Heather
0 -
Hi folks,
I need a little help from friends today. Never like to complain. Positivity keeps me gong - usually. Pain has been reaching a new high. I am trying to manage without narcotics and looking forward to new treatment. Lots of nerve pain like bee stings. Stiffness from the cold. Trouble walking. I know I'll be okay soon. Just need a little encouragement.
Thanks for listening.
-JeeNee
0 -
Hi Jeenee, have you ever tried acupuncture? Curcumin?
0 -
Wendy, if I forget later, good luck with tomorrow
0 -
Well, ladies, it seems I'm joining the Progression Parade. The Mystery Lung Spot grew by 3 mm...so I guess it isn't a mystery any longer! I'm actually pretty bummed because I liked floating down Da Nile and this seems to prove it's in my soft tissue. (Up until now it's been speculative)
As of June, I was still slightly peri-menopausal. They are going to check again in six weeks or so. I'm really hoping I won't have to take Lupron or Zoladex so I can get an aromatase inhibitor.
Any advice about which ovary suppression and which AI have the fewest side effects? My onco is very good about considering my wishes in my treatment plan. She's looking into trials for me as well, but I don't think I'm interested yet. This will only be my second med and I don't want to over-treat and have nothing left in the arsenal. Plus, the trials are only at one hospital which is a subway ride and a short train ride from my work, involves frequent blood work and I just don't know if I have the energy!
Does anyone know (Z?) if indol 3 carbinol will affect my blood estrogen levels? I had stopped taking it because I was stable for so long, but I'd like to start that back up, particularly since I'll be off everything until after the New Year. But I won't take it now if it will screw up my menopause check.
0 -
Milaandra -
I did Lupron shots with Arimidex at 40. Put me into menopause pretty quickly with low side affects. Its different for everyone, but my single bony met healed after radiation. I had 6 years w/o disease progression after that.
- Heather
0 -
Sorry you're not feeling well JeeNee. Unfortunately I'm in the same boat today. It even hurts to blink my eyes. I've had fever s with these intense body aches at least 3 times in the last 6 months. Feeling healthy and productive doesn't seem reachable these days
0 -
JVF -
I'm so sorry to hear that and glad we can support each other. Where are you in your treatment ? Sometimes distraction is the best you can do. Facebook with friends. Sometimes humor makes it in there. Post on the message boards. I have been watching a lot of tv. PBS - Frontline especially. I have expanded my mind and political knowledge a great deal lately.
I just can't wait to get started tomorrow, even thought I know I might feel worse at first. Have a follow up with my RadOnc too. Spinal cord compression issue is getting worse. Sounds as if you could use an anti-inflammatory. Do you take Aleve or Ibuprofen. I also really like ginger turmeric tea. Heating pad is also helpful. I pretty much have one on all the time.
Milaandra - I may try accupuncture now that I am on a different trial. Couldn't do it before because of bleeding risk. Somethings gotta give. Progression is pretty bad for me. Ca-15-3 is 87. This is high for me. Highest prior was 54.
Thanksgiving is next week. I need to suck it up and get through a trip to visit family out of town. I have arranged for the most comfortable possible journey and accommodations. So I am hoping it will be a nice change of scenery rather than a burden.
Hang in there!
-Heather
0 -
OMG Jeenee my onc has put me on letrozole twice now and after only a short time on it like three weeks maybe I would have major progression each time. I said to her I swear this stuff is killing me. She laughed it off. Wow I'm gobsmacked
0 -
JFV and Jeenee. Do you take an anti-inflammatory? I take 15mg Meloxicam every day! I got the bright idea about 6 weeks ago, due to severe constipation, to go off for a while. What a total and completely idiotic thing to do! Between my bone mets and my arthritis, I was in agony! Also, I don't know about others, but the cold definitrly affects my bone pain. I dress warm, use heating pads and my wool throw is getting a lot of use. I also have a down comforter for the cold nights. That provides a warmth that soothes the pain.
Miilaandra, I am very sorry to here of your progression. Hopefully your new treatment will slap you back to NED.
Hugs and prayers,
Claudia
0 -
When I was on Arimidex I took 600 of Motrin every night - what a difference. No longer on it since my kidney function is less than ideal- but really helped.
I also will put in a plug for a heated mattress pad-can get them in Bed, bath and beyond or macy's or online. I get into a warm bed (put it on 30 min before bed) if it's super cold I keep it on all night, if not, I turn it off when I go to sleep. Can get dual controls also. So lovely.
0 -
Thanks ladies. I tend to forget to take my pain pills. I'm having a hard time today with pain. Still waiting for my Xeloda to show up.
0 -
Jeenee- You are going get past the pain in short order, I can tell by the way you reached out for help. I don't know much about pain and pain killers, knock on wood, but it always worries me when people say they aren't treating their pain. What I do know is how chronic pain effects my mental state and the mental state is the foundation for healing. I hope that you can find enough focus and energy while you are suffering (that's the hard part) to find a way to treat the pain rather than endure it. Acupuncture is definitely something to try.
I was reading an article about new less addictive pain killers.. Butrans (buprenorphine) and Lyrica were mentioned but I really don't know what is available in the class of drugs. What I do is that doctors don't tend to prescribe them because of the insurance paperwork required.
It's important not to take pain killers too much because of the risk that the drug becomes less effective with time (or so I've heard. Again, not the expert here.). But if addiction is a concern (as it should be), then I think there is a class of relatively non-addictive pain killers if you advocate for them. And you advocate for them while you are in pain, of course.
Take care and feel better.
>Z<
0 -
Today I had my CT scan my tumor markers have been on the rise for the last three months a month and a half ago my Pulmonologist ordered a chest scan and some shadows were seen on the liver. Appointment with oncologist Friday to see what my next treatment is.
Aurora
0
