Hi 50sgirl -

Thanks for checking in.  Questions are good and I do have some answers.

Yes I will continue to meet with the trial team as I did while the trial was open. Nothing changes for me. Perhaps they'll spread out my scans to 3 months instead of 2.  

I don't know if they are going to try the trial drug with something other than Tamoxifen.  I can ask.

I don't think the trial worked only on me.  It just kept working longer for me. It may have worked for others for awhile and then failed.  

So far I've gotten 7 months out of it.  Unfortunately I don't think my Oncologist is expecting it to go on for years and years. It's more likely I'll get another 2 or 3 months.  We can always hope for more!  He said when this one stops working I can do another trial or go on to Xeloda. Honestly I'm still not ready to go to oral Chemo.  I feel too healthy.  I have 3 little mets in my liver and dispersed bone mets.  I haven't had to take anything other than advil for any of the pain I get.  

I'll see if I can get answers to you other questions next week.  I'm kicking myself for not asking them myself!

Thanks for your support.  You are always so compassionate and understanding in your posts. We all need that!

It is amazing how quickly things can change. My July scans were great. Stable bone mets and stable liver mets. The bone mets showed "faint" progression but were considered stable. My oncologist went out of his way to underscore how this was not really progression. My blood work was pristine as usual. My tumor markers are usually low but were slowly trending upwards. My oncologists keeps reminding me that there a people out in the waiting room that have tumor markers in the hundreds and thousands. Mine are barely in the double digits. But for my body that is enough for me to indicate that the drug is failing. But I wasn't going to make a stink about it since the scans were good and I was feeling pretty good. However I did ask for an MRI to see what could be causing my back pain other than cancer. Maybe it was an orthopedic issue or degenerative disease. My last MRI was in 2016. The team didn't think it was indicated. We went back and forth on it and finally I backed off. So we moved forward with Cycle 11. I think that was a mistake. I should have insisted on the MRI.

I was about to start cycle 12 (8th month) of this trial drug on Monday Aug.6. On Aug. 4 I began experiencing pain in my ribs. I do have mets in my ribs so it is understandable that I will feel pain there from time to time. I took 800 mg of ibuprofen (I don't like taking stronger meds if I don't absolutely have to and sometimes I don't recognize when I absolutely have to). That took the edge off and I didn't think too much about it. I had been experiencing a lot more overall bone mets pain for over the past 2 weeks (including my nagging back and neck pain) and I just figured that was par for the course. My oncology team had not been focusing on my bone mets although I have complained about my back and neck at each visit. They were more focused on my liver mets which there are only 3 and they are small. None of the pain was unbearable until Saturday Aug.4. I had been constipated for days and was taking Senna and Colace with little relief. So I added Dulcolax on Friday night and I was able to have a bowel movement Saturday morning but it was like shitting bricks. Very difficult straining, doubled over on the throne. Quite the pretty picture. The pain in my ribs worsened considerably through that day. Although I have oxycodone and naproxen I continued with Ibuprofen (as I mentioned above I don't always recognize when it's time to go to the big guns for pain). I took more Dulcolax that night and Sunday became a repeat of Saturday but with more severe pain in my ribs. As the day went on the pain became so intense I would squawk if I moved my upper body. My entire ribcage was tender and sore and the pain radiated from each side of my ribcage to my back. I was beginning to think I broke a rib while straining during those bowel movements. Around 5:00 on Sunday I decided to go to the emergency room. I really thought I broke a rib. Well x-ray showed no fracture. Since I have stage iv cancer the ER went the extra mile and performed a CT scan to check for a blood clot in the lungs and get a better picture of the ribs to check again for a fracture. Both came back negative. They gave me iv morphine and I got no relief. I asked for Dilaudid and that helped. They offered to admit me to get through the night managing the pain. Since I was scheduled to see my oncology team the next day I declined. They discharged me and told me to follow up with my doctor. I was in the same pain Monday morning but managed to drive myself to MGH in Boston.

My oncology team couldn't believe I drove myself in. I could barely move without yelling out in pain. They said they were going admit me because the pain needed to be managed and the cause needed to be identified. They set me up for an MRI (hmmm didn't I ask for one in my last visit?) and cancelled my echocardiogram and zometa infusion. The MRI showed a second compression fracture at T10. I had a stable compression fracture at T8. T10 was new and considered to be the cause of this peculiar pain. Initially I had just 2 treatment options: 1) radiation or 2)kyphoplasty.

The radiation oncologist came to see me and said that he didn't think I was a candidate for radiation. I don't remember what the reason was other than he didn't think it would relieve this pain. That was disappointing and a little scary. Then the Interventional radiation oncologist came to see me and we reviewed my previous discussion with them when the T8 compression fracture was found. I was told then that I wasn't in enough pain or debilitated enough to have a kyphoplasty and that it wasn't a prophylactic procedure. And to an extent that was true. I had more of a nagging pain than a debilitating pain back then. It would be up to me but they didn't recommend it. But we could revisit it should the pain worsen. So I didn't have the procedure. Needless to say I was floored when I was told the same thing this time. I asked how was I supposed to treat this pain? Just with pain management? I didn't want to live the rest of my life, which I hoped there were still several good years or more to be lived, having to take oxycodone and hydromorphone . I realize that at some point pain management will be my only option but I didn't think I was quite there yet. I told her that radiation wasn't an option either. I was very discouraged. She and I continued to talk and she explained that interventional radiation is different from the other areas of oncology. The treatment options are just that, "options". They will never tell a patient that he/she has to have a procedure. It is always a soft sell approach. They will present you with what the procedure entails and how it may help or not help (there are no guarantees with any procedure) but they won't necessarily recommend it. I got the sense that she was telling me that she can't or won't recommend it but I should have the procedure. It was like wink wink do it but I can't tell you do it. Very weird. I said I wanted to have the procedure. So we were moving forward on the kyphoplasty on T10. I asked about possibly doing T8 too and could they look at C5 that may be the cause of my nagging neck pain. At first they said they wouldn't do T8 at the same time, just the one that is causing the pain and they would look at C5 at a later time. In the end they decided to do T8 too.

Shortly after the interventional radiation oncologist left, the phone in my room rang and it was the radiation oncologist. He said that he went back to review the slides again and there was a slide he hadn't seen. Apparently there was something on that slide that changed his mind and now he was recommending I have radiation. So I went from both options being off the table to having both options being combined.

So I had the kyphoplasty on both T8 and T10. It hurt enough to cause me moan a few times but wasn't terrible. After the procedure my pain was managed well with IV dilaudid, oxycontin and naproxen. The next step is 2 weeks of radiation and screening for the next clinical trial. I will open a new topic for that clinical trial.

We are always celebrating when we have good scans. We feel the scanziety before the scans and then relief when the results are good. But I look at as we are only as good as our last scan. Anything after the scan is a crap shoot. It is very difficult to live in such uncertainty.

P.S. I forgot to mention that this all happened while my oncologist was on vacation.

Hi Yaelle - thanks for your support. I’m sorry that the trial in Belgium is only for first line treatment. Obviously the trial I was on accepted and may even have targeted pretreated participants. For what it’s worth this trial drug was very tolerable. I wish it had worked longer.

You asked if I had any sequencing. Do you mean is there a specific sequence of treatments that I am following. I’d say yes and no. As long I have clinical trials available I prefer to participate in those. But if there aren’t any at the time my current treatment fails I would follow the next standard of care option. For example if I didn’t have a clinical trial available now I would most likely would end up on xeloda. But once that failed I would look for another trial first.

As for checking for changes in the hormone receptors and her2/neu status of my cancer, it is baked in to every clinical trial via biopsy. So far no changes.

Thanks for your input and suggestions. It is so encouraging to have this site. We all look out for each other!

I hope halavan is treating you well and continues to keep progression at bay

Quick update to this thread:  It has been a miserable couple of months having been hospitalized 4 times but I think I'm back on course. My  bone mets went into overdrive while on this trial.  Although the liver mets shrunk.  I had multiple rib fractures and compression fractures to multiple vertebrae, as well as a broken clavicle. No cause for the fractures.  Just spontaneous.  It's like my bones are potato chips. Very painful and difficult to manage.  After 4 Kyphoplasties, radiation to spine, ribs and sacrum and pain management changes (from Oxycontin/Dilaudid to Methodone/Decodran I am finally climbing back up from under the rock.  I'm feeling better, but still in the pain management arena. 

When the growing bone mets were identified they tried Xeloda but I didn't last more than 2 days.  The edema to my legs was frightening.  my team was very concerned that the cancer was getting too aggressive and wanted to kick it back with IV Chemo and so I am now on Paclitaxel (Taxol).  I will posting over at the Taxol thread.  I won't be adding to this  thread anymore.   Feel free to contact me though if you have any questions.

Thanks to everyone following me on these trials.  I don't think I'll be participating in another one for a while.  Hoping the Taxol keeps me stable or while.

Cathy