Bone Mets Thread
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Hi Ladies,
Annie I will let you know for sure if I ever get it from the drug store. Apparently it is not widely used and very expensive (my MO asked if I had a private drug plan). He also said it's not something they keep on hand they would need to order it in due to cost/expiry issues. My constipation is chronic due to my colon is not contracting to move it forward. This apparently makes it contract. I am on Fragmin (blood clot injection) and the doctor told me this would happen taking this drug. Also it happens with narcotic use. So that's how I ended up like this. Normal stool softeners don't help but just to make it loose not make the bowel contract. I'm going to call the drug store when they open and see if they are having any luck with getting it in.
Xavo - thanks for the tip, so nice of you to try to help. That's one thing I love about this site. Don't know what I'd do without it. I will keep it in mind and thanks Deanna for letting us know it's on ebay.
Linda54 - Thank for the compliment on my new avatar. I was leaving the house for chemo when my daughter took it last Friday. I am so sorry to hear of your progression even if it is small. Good luck with your scan on Friday, fingers crossed.
AmyQ - I sure hope your spots/bumps are NOT mets. Is there any change in size? Growing?
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Thanks for the link to the skin mets thread and the advice to have these checks. I'll give it one more week just to see if there is an increase in numbers and if so, definitely going to go in and get them checked. I appreciate your concern...I really do!
Amy
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Good morning!
Thank you for your good wishes ladies. I feel so priviledged for the support here.
Kartz - hoping with you Tamoxifen is killing those buggers! I get a good chuckle when you talk about cold weather.
Annie - didn't know that barometric pressure can cause pain. Very hot and humid here as well - I feel it in my body and bones. Not fun. Yesterday was 40C or 100F.
So today is oral hydration (mucomyst) for my scan tomorrow to protect my kidneys. That stuff stinks and not pleasant to drink.
Cathy - hoping your chemo went well. Do you have many SEs?
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Amy and Cathy, is the drug Relistor? I'd be very interested in how well that works. I am taking Linzess now. It is helping, but not very much.
I am still in a holding pattern. Decided to give the Xtandi possibility a few more days. If nothing by tomorrow, I will go in for a picc line and start Gemzar early next week. I am frustrated with the 2nd opinion stuff. Still pursuing, but not wanting to hold off treatment much longer.
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The message from my friend at the path lab:
Good news! Your cancer marker is down on last time! It was 66 in June now 40! Your liver functions are perfect so you need quite a few G&T's and your full blood count still has a slight low neutrophil count but not any worse than Mays count but your Hb is up to 13.2 so you aren't at all anaemic any more. So all good! Must be the cold!! Yyyyyaaaaaayyyyyyy!
I am so relieved! Felt nauseous waiting for the results & am now laughing & crying into a glass of wine.
I'm not made for any form of scanxiety! Thanks for the virtual handholding all xx
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Romansma - you are a wise woman. I hope you get what you want.
Kartz - raising my glass with you! Can't ask for better results.
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Karz, Great news for you! I know that anxious feeling when you are waiting for results
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Great news Karz - happy for you!!
Just got a call from the nurse at my Onc office and she told me I was approved to use Xtandi off label and the pharmacy would be calling soon to set up delivery. Wha? Not sure I believe it. I am surprised and excited and wow! I will be a lab rat because there isn't much data out there on this, but oh well. I'm up for it!
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Great news for you Hope!
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Great news Karz and Hope!
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Karz, I'm so happy and so relieved for you! That is great news! I'm having a glass of wine with you.
Romansma, oh my goodness, you go girl! Wow you did it, I'm so happy for you! You're amazing and inspirational, wishing you all the best with your new treatment.
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Yeah Romansma - you go girl! Absolutely thrilled for you.
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LindaE and Deanna, will be thinking of you both tomorrow and wishing only good results on those scans!
Hope, you are amazingly resourceful and way past due to have that resourcefulness pay off. Best wishes for great results and minimal se's with Xtandi.
AnnieO, What a beautiful picture of you and your girls! Hope the good times together in the sun and water were healing for all of you.
Karz, Congratulations on your good news! Hope those happy tears only made the wine taste better.
Cristina, So sorry for the loss of your beautiful cousin, way too young, it's just heartbreaking. Hope you have great success with your new tx. Keep us posted on how it is going.
Cathy, Chronic constipation, vomiting, and nausea?! So sorry you are having such a rough time right now . Hope you get that rx soon and start to feel better.
Hi Lindalou, I am in WI too, near Eau Claire. Where are you located?
Best wishes to AmyQ, Myra, Terre, Xavo, PattyP, Dune, and everyone else I missed.
Just got a letter from my insurance today giving me the okay for Ibrance. My recent scan after 3 months of Faslodex showed good results and I have gotten used to the se's, so now I'm getting cold feet about adding Ibrance. Has anyone read a good explanation of how Ibrance works?
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Thanks Jobur. Congrats on the Ibrance approval. Come over to the Ibrance 2015 thread. Lots of good information. However, just a quick explanation. Ibrance blocks pathways that allow the cancer to grow as well as making the Faslodex effective for longer. The side effects are minimal and doable. Low blood counts and fatigue is the main side effects. Many are having very good results.
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Great news Hope! May Xtandi treat you gently.
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Good luck with the scans Linda & Deanna.
I keep going back to the pic of Annie & the girls...makes me smile!
Congrats Jobur! My MO said he's hoping for quick approval here as he thinks Ibrance is fantastic. Looking forward to seeing how you go on it.
Hugs to you all and everyone else. Sorry for not listing everyone; long day today; 9 pm and just got home from work. Left a 6 this morning, and I'm just too tired to think.
Terre
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Hope and Karz- such good news for both of you!
Annie - you are having scans next week right? I go Monday and Tuesday and will now get 500mg. ( two injections) of Faslodex this time. I will be thinking of you.
Tryn - have you heard from your radiologist?
AmyQ- could the spots be an allergic reaction? Do they itch or burn?
LindaE and Deanna- scans today right? I'll send you lots of good peaceful thoughts to get through the scans.
jobur- I live in Stevens Point. For surgeries I go to UW Madison to the Carbone Cancer Center. UW has been great. Have an incredible neurosurgeon in Wausau. Where are you doing most of your health care? I've been to Mayo for second opinion.
Have a good Friday everybody, best to those having scans.....
Linda
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Sending tons of love and prayers to all having scans and tests today. Myra.
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Hello to all,
Jobur, thank you and yes the sun and water is very healing to me and any time I spend with my girls is so rewarding, we're so close to each other and this has been so hard on them. Congrats on your approval for Ibrance and I'm so happy for your good results with faslodex.
Terre, what a sweet thing to say, you always make me smile and laugh which I love. I admire you for your strength in being able to work such a long day, that's amazing! I don't think I could do it.
Linda and Deanna, thinking of you both today during your scans, praying for good results.
Lindalou, my scan is August 6th, thanks for remembering and I'm so nervous because my back is really bothering me, I do have to remember I have MS as well which also causes me back pain. Last tm's went down to 13 and my onc was ecstatic about that but I get scared because they say tm's are not always a reliable indication of what is going on. I pray they are for me, I'm so tired of being scared. Best of luck to you with your scans and with the increased dose of faslodex. Did you get my detox email?
I'm going to stay at my friend's today with my eldest daughter, girl time. We're just going to lounge in the pool and talk, eat and snack and do whatever we want! Spending the night too as it's a bit of a drive back and I tire easily. After breakfast in the morning we'll head back home. My poor dh is going to miss me, he's always so lost without me, makes me sad. But he totally encourages me to do whatever makes me happy and I'm grateful for that.
Hugs to all of you wonderful ladies, wishing for a pain free day for all of us, Annie
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Good morning all,
Thank you so much for all your good wishes. Deanna - I guess we're the lucky ones today! Will be holding your hand in spirit.
Jobur - that's excellent news re Ibrance. And congrats again on good results with Falsodex. Let us know what you decide.
Terre - My MO thinks Ibrance is good stuff as well. It could be approved here in Canada sooner than expected. Let's keep our fingers crossed.
Annie - what a nice plan for today! Enjoy every minute. Your hubby will do fine.
I made plans to make all my funeral arrangements this afternoon. I felt relieved but now this morning I chickened out! Woke up with such anxiety that I cancelled the appt. I'll think about it again later on this year. I hate not being able to move on with this. It's not the first time I do this. Maybe too much in one day...
Myra, Kartz, Lindalou, Cathy, Janet, Patty, Dune, Romansma and whoever else I'm missing - wishing you a good day!
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Annie, I did get your PM methods of detox and sent a reply via PM. I bought some Epsom salts today and will use them a lot next week!
Thank you!
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Good luck with scans, Deanna and Linda.
Excellent news for those starting new meds. May they treat you well but attack those cancer cells with ferocity.0 -
I don't know which is worse -- scans or the traffic getting there! Linda, I'm thinking of you too. Holding virtual hands or having a scan buddy. & prayers definitely eases the fear.
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Hope: I'm so happy that you have a new treatment plan !
Best wishes to everyone starting new treatments !
Everyone getting scans I'm praying for good results for you !
Linda : The Epsom salt baths are the only thing that helps my bones! The magnesium in it is suppose to be good for our bones ! I use a lot of green alcohol too to rub my bones before I go to bed at night !
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Holding your hands in spirit today for the scans. And yours on the 6th Annie.
Lindalou - good look with your treatment. I so admire your courage.
And regarding new treatments - Caryn said it well - may they destroy the cancer with few side effects. I'm praying that you all become like my friend Bob who went into hospice to die of AIDS in 1996, got protease inhibitors as an experimental treatment, and went on to travel the world, be best man in our wedding, and start a career as a teacher. These things do happen and I pray they happen for you and for all of us.
Myra, Kartz, Xavo, Cathy, Janet, Patty, Dune, Romansma and whoever else I'm missing - wishing you a good day. It's Saturday here, so wishing you a good weekend too!
Terre
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I do not know why I want to write down the following, may be because it could a reference for those who are new to this disease, or, maybe because I have urgent questions.
I was in the hospital all day yesterday for the first set of follow-up scans (CAT scans - chest, abdomen, and pelvis, and whole body bone scan). Two days prior I had the fourth set of blood work since the treatment began (2/28/2015). Surprisingly, by the time I was leaving the hospital, I was able to obtain the CT radiologist's reading. And when I got home, I learned from the message left on my answering machine by my onc's nurse telling me that the blood work showed good response to the treatment. So I viewed the blood work results from my patient portal which became available yesterday. Good things first. 1, My tumor marker, CA 15-3, continued decreasing (259; , 205, 150, 85), although still quite a lot above the normal range (0-40 some?); 2, the ALK PHOS (bone enzymes or liver enzymes marker) has decreased to normal (500 some in March, now 97. Normal is below 103. Note if it's elevated, bone diseases or liver diseases could be suggested . In my case, it's the involved bones reacting to offenders by creating more of themselves); 3, except the still high CA 15-3, all my blood work is normal; 4, CAT scans showed no findings of soft tissue or organ involvements. Now, the bad things. The worst: the CT radiologist sent an orange message to my onc regarding his impression of the CT reading, he found a severe compression fracture at T9. The worse: the chest CT showed foci mets on my right humeral head and clavicular head, which is new to my knowledge in terms of specific locations (my diagnosing CT did not include the chest, the report of the whole body bone scan only contains two sentences: "Numerous foci abnormal increased radiotracer activity within the skeleton, particularly the appendicular portions. Extensive involvement of the spine diffusely." (too generally to qualify for being professional in my opinion now.) It is clear that the text of the first bone alone does not provide the value of the baseline for the follow up scans to compare with. One needs to view the films to compare. I do have the films, but not yet have the heart to learn how to view them. I will have to wait to read the newly done bone scan report to figure if there is any change lately. So, here is the bad: I feel that some doctors let me down. I am having this life threatening horrible disease and relying on them to study and to treat, yet they treated the situation lightly and irresponsibly! (here is the story behind my bad feelings: since last summer I had frequented my ex primary doctor's office for the pains surrounding my lower rib cage but only had one x ray ordered by a sitting in doctor. My ex primary kept dismissing my complaints. Even the ALK PHOS elevated to 178 the ex primary wrote a note that it is not high enough to be concerned. I had to pick a day when another doctor sat in for her to have my complaints of the pains heard. This doctor ordered abdomen CT which found the bone mets. Then this same doctor ordered a bone scan in order to confirm the CT findings and then left the matter to my ex primary. My ex primary totally ignored the whole thing, not reading the bone scan report until one week later my onc called me to let me know he's going to order a biopsy (informed by the sitting in doctor of the CT findings but not knowing that I also did a bone scan) then I paid an office visit to ask her to let me know the bone scan results. Then she pulled out the report in her laptop and read it the first time in front of me on site. Worse, once the ex primary realized what's going on, she acted coldly. After briefly went through the two sentences in the report with her own words (leaving the important word "diffuse" out due to her lacking the knowledge of it), she had no comments, no further instructions of what I should do, and no sympathetic attitude. She almost escaped from me, as if I was a total wreck and a total disaster. The worst for her, after she found out from my onc that my onc dos not think my death is imminent, she asked to lead my treatments! She, a general family doctor attached to the county hospital, not even knowing the word "diffuse", thought she should be the boss of my onc who belongs to a teaching hospital. She thought so might well be that she was broke due to her tiny clinic dissolved (her only partner-associate broke up with her) and thus she was desperate for venues. My onc might be a soft spoken man but wise enough to have her self invitation rejected. of course I decisively and quickly fired my ex pd. By doing that, I gained access to the original lousy bone scan report whose author belongs to the county hospital. I finally realized my records are a mess.
OK, too long and too boring. Back to my new CT done by the teaching hospital my onc belongs to, which also raised questions. The report of the supposed baseline CT on abdomen and pelvis, done in the county hospital, has just one sentence commenting the bone mets but rather specific: widespread lytic lesions involving all of the vertebral bodies the sacrum pelvis, right femoral head, and left femoral neck, as well as multiple ribs. My bone biopsy was done on a spot on my right side pelvis bone. To my big surprise, the new CT findings did not include any of them. The new CT report has two parts, one for abdomen and pelvis, the other for the chest. In the abdomen and pelvis part, the bone findings somehow are all about the spine and the rib cage, the only thing in the pelvis area is "there is lumbarization of s1". ??? What happened to the mets mentioned in the first CT? Shall I wishfully imagine they are all gone? Or, the first CT reader simply saw some ghosts? What does the severe compression fracture at T9 suggest? Shall I seek local treatment for that? The fracture's age is not known. It might well be the cause of the severe pains and dysfunction of the muscles surrounding my lower and side rib cage earlier this year. The new CT also found mild bibasilar atelectasis (partial claps at the lower part of the lungs) which I believe is caused by the T9 fracture). My onc seemed to believe the systematic treatment holds the key to all my problems.
Shall I be very frustrated?!
I will see my onc next Wednesday.
I have an appointment for second opinion in Dana Farber on 8/17.
I am too full of ill feelings to re-read what I have written here, and to warmly send my regards to everyone specifically. I am very sorry for that.
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Oh Xavo. I am so very sorry to read this. You're handling it better than I would; my rant would be sprinkled with profanity. This disease is bad enough without having this kind of crap happen. Very happy you're getting a second opinion and that you have all your records. Can't offer much advice, but can go buy a voodoo doll of your ex primary and uncaring doctors and stick pins in them on your behalf. And I'll pray that you get answers soon. Coherent, caring answers.
Sending you hugs,
Terre
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Xavo, just know we are here for you. Hugs from me too.
Amy
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Oh Xavo, it is utmost frustrating. I'm so sorry. It is a shame that the chest was not included in the baseline. And I wonder if the new CT scan went further down than the abdomen, ie femurs. It reminds me of my dx imaging - the scans did not go below the abdomen and the bone scan did not pick up the large met on the femur. My second opinion doc ordered a PET scan which revealed it. Emergency surgery for femoral rod insertion followed. The first 6 months were hectic to say the least. You are so right to keep copies of everything and to be your own advocate. From my experience, radiologists are very different in terms of terminology, details, etc. It drives me nuts. I would like to be a little fly on the wall to listen in at your Onc's appt. on Wednesday. I'll bet you will have quite a few questions. And congrats on getting a second opinion. My Onc gladly cooperated in this process. Good news on your TMs though. Oh and the nerve of your ex primary doc. Having said all this, the first months can be confusing until you have a few scans. Best wishes to you and you can be sure I will be thinking of you on Wednesday.
Gentle hugs
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Xavo, Wow! There are no words to describe what has happened. I am very glad that you are getting a second opinion. Maybe then you can get some straight answers. So sorry you have to go through this
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