A place to talk death and dying issues
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Calico, No extra traveling just the three hour trek into San Francisco weekly. But I've been doing this since 2009, so it;s the same strain and exhaustion as before, but now with more positive results. I found that many trials can be done with your current Oncologist if they are willing to do the paper work involved. There is much more testing of nerves, CT Scans, extra blood testing and they watch and record everything happening to you. So that they have the positive and negatives of people involved in such trials. I must say that they take more time and much more interest in your daily life, how your handling being Stage IV, hearing and heart checks, etc. So I know that right now I'm getting the best of care that I've ever had. A doctor even calls me once a week to check in with me on how things are going to just talk and ask if all is well or if I have any questions or concerns. Trials for Stage IV Breast Cancer Patients can really be a positive, I'm sure that not all the new meds out there that they are trying to put on the market for us will not all have positive results for everyone, and I've heard many don't make it to Stage III. However, because it is working for me they will keep me on this for as long as it keeps positive results and no new tumors. So even if the trial finishes I can stay on these meds. Last count I believe I had more than 27 tumors/lesions in both organs and bones of the spine, ribs, hip, femur (I have six in the left femur alone), clavical, sternum, liver, 6 in my lungs as well as over 10 lymph glands that are now with cancer, in kidneys, and a small amount in my jaw, also in my stomach and from liver into the aorta. So to have them stable and not growing and my tumor markers lower than they have ever been which is now 135 they have come down well over 760 points in less than two months. I just feel blessed and wanted to share in hopes that maybe another sister could find a trial that maybe would work for her and give her some extra time. No one ever told me about trials and how to find them or mentioned such, it was out of desperation and my children wanting me to so live at least another year. I know that I would have given up by now from everything but because I'm doing it for them, they know that I'm trying as hard as I can as their mother to be there for them for as long as I can. I hope Calico that you are feeling somewhat better, we have talked on the boards before and I remember you fondly and really hope you're in less pain and have some peace of mind with all that is going on with you. I feel the mental stuff and stress is the hardest thing for me, it's not sleeping over worrying when will the ball drop and have had so many days that I felt this is it. I have DNR and other things in place so when I collapse and things get bad I take pain meds and only hope that my body gives me another day, I no longer go into the hospital for any complications. So this trial has given me time and knowing that this year will not be my last (but no one has that magic bullet that guarantees such with being Stage IV, anything can happen at anytime.).
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Thank you, M360, for all the information!
xoxoxoooxox
Calico
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M360, Thanks for sharing your story about how clinical trials have affected your cancer status and life overall!
Here's a link to a Cure Magazine Spring 2015 story, "Meeting Your Match," about services that help patients find clinical trials that are a good firt for them: http://www.curetoday.com/publications/cure/2015/spring2015/meeting-your-match
That article lists these matching services with free searchable databases:
Nonprofits: https://www.breastcancertrials.org/bct_nation/home.seam http://www.cancertrialshelp.org/ https://www.ciscrp.org/programs-events/search-clinical-trials/
For-profits: http://www.centerwatch.com/clinical-trials/listings/ http://www.emergingmed.com/networks/AstraZeneca/ http://myclinicaltriallocator.com/# http://trialreach.com/
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M360,
So very happy for you. Sad to think you had to figure this out. I would hope our docs would be on top of this for all of us.
We do need to be our own advocate. Much time with positive results!
Be well
Nel
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I have made repeated attempts at trying to get Ibrance and my onc shoots it down. sigh... cancer sucks. Glad somebody gets to try what they want.
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Hi, sisters, back at the ranch, I've been taken off Carboplatin and Gemzar while my head is tightly masked and bolted to a radiation table so I can have 10 sequential whole brain radiation treatments due to my ever-expanding brain mets. Who said this wasn't going to be fun?
Most likely SEs - "mild" headache (yeah, right!), fatigue (Oh, THAT would be novel!), and a more sieve-like brain than I already have.
In the meantime, I find all I want to do is say, "F _ _ _ YOU!!! F _ _ _ YOU!!! F _ _ _ YOU!!!", but I don't know to whom!!!! (Certainly nobody here)
Sigh . . . . . . . . . .
xoxoxoxoxoxo!!!
Calico
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Think about u often, big hugs, so sorry, hang in there..do u have something to look forward to like i have florida
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Hi, Blondie!!! I do have a little something to look forward to. I'm going to an Indigo Girls concert at a beautiful garden in the San Francisco area toward the end of the radiation treatment. I hope I feel well enough to go.
You have a blast in Florida! When do you leave?
xoxoxoxoxo!!!
Calico
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Calico- I like Indigo girls! I hope you feel well enough to go to the concert! The good news is if you can get someone to drive you, even running 1/2 strength the brain can enjoy music! It is just fine to tell cancer to F-off... multiple times. I feel the same way. Vent frustration to the hills... let it out. I hope it isn't too bad the WBR.
I have also been feeling like crap lately.. bloated miserable.. CT and MRI today. I won't know anything until middle of next week. We will see what's up. My labs are fine, but my belly is decidely not. I keep getting odd head aches too hence the MRI.. lovely. Hoping it's allergies? Never a dull moment in cancerland. I have asked for a trial of Ibrance and can't figure out why other folks on the board get it and I am refused. WTH? It's not like I am getting better. My H&H is good so the cancer hasn't eaten out my bone marrow, as it so happily has in the past. Maybe I have a different cancer.. would be my luck. It is supposed to be 99-100 today. ugh. Tomorrow 102!
Blondie I am living through you kiddo! Enjoy your trip with your adorable GS and the rest of your family. I want to hear all about it and see pictures. I think Spookie and Sass are about as excited to meet you and have lunch! Wish I could have met up with them when I was out in January. Geez never enough time. Enjoy yourself count down to Florida.
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Hey there rosie
Calico big hugs
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Portland traffic is hideous.. stressful 10-15 mph for 1 1/2 hours, total time over 2 hours. OMG I have such a headache.. if I didn't have this stupid cancer I would go stay in the woods. No traffic, no people just a scolding Scrub Jay! No internet no AC.. pretty hot.
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Calico, Well, I know I'd probably be saying F*** Y** to CANCER if I were in your shoes right now. Sometimes it's hard to contain such a mix of intense feelings, and anger often bubbles up to the top of the mix pretty quickly. I discovered that yesterday when I was doing Tai Chi to help me feel calmer and more focused. I just became more and more angry, but I realized there were other feelings bubbling around, too--anxiety and grief. My Tai Chi disc ends with the narrator saying something to the effect of "You've learned more about yourself today," and I actually yelled, "Yeah, I learned I'm angrier than I thought I was!" I will steadfastly hope that your WBR treatments will yield the least amount of side effects possible and the best possible outcome. And that you will feel well enough to see the Indigo Girls.
Blondie, Do you have everything in place for your trip? How are you feeling these days? Do you have good pain control? Thinking of you as well!
Rosevalley, sorry to hear you've been feeling like crap lately. Will be thinking of you as you await CT/MRI results. Hope your weekend will offer some time of relaxation and no struggles in the midst of insufferable heat.
Nel, glad to hear from you as always.
on being your best advocate! I also recommend having a well-trusted person as back-up for those times we are struggling to do just about anything. On my end, I suffered a misadventure with an oncology RN a few days ago and now have a leaking port in my chest. I have to wait until Monday to have the port removed so that warfarin gets out of my body and removal will be safer. Unfortunately, in the midst of this fiasco the oncology group dropped the ball--to put it kindly--on my care and I had to depend on my internist to save the day. My husband lately is betting that medical care will kill me before disease does. I've decided I'm going to stay more hopeful than that, but I really empathize for our loved ones who witness us going through all manner of illness, side effects, medical mistakes, decreased quality of life, etc.
Hoping for a peaceful, comfortable day for each of us and all who love and care for us!
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Hi, Rosevalley, so very sorry you are feeling funky. I hope you get some "benign" answers to your bloating/headaches. I find it impossible NOT to assume that every ache and pain isn't the BC. This isn't our first rodeo.
And what the heck is up with the Ibrance??? Your onc's non-answers would trouble me a lot, too.
It seems I'm just naturally bloated, or at least every time I go to my GP, he comments on it. Can't say for the life of me what would cause it.
And, Brendatrue, I'm not feeling quite so PO'd as I was a few days ago, but know it will come again. How can we not??? "Somebody" has to answer for this!!! Just wait 'til I get my hands on them!!!
Well, going to see "Spy" today. Anybody else seen it? Oh, and the temp will hit 104.
xoxoxoxoxoxoxox
Calico
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I saw spy. Lots of explicits but pretty darn funny! Enjoy calico! Thinking of you all often
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Rosevalley, what is the reason the oncologist wants to deny you the Irance/ Femara protocol. It has busted the tumor markers in three months. Unfortunately, I have acquired neutropenia. But we work with it and lengthen the time between the intake of Ibrance only. Keep on asking because it seems to be a real cancer killer. good luck cds
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Honestly I haven't a clue why he steadfastly refuses. All these other women get to try it. Ibrance seems to have less side effects. Right now I am miserable and am getting to the point where I could care less anymore. My gut is so tight.. just hurts 24/7 and I don't want to do anything. I thought I would pop getting the contrast down fot the CT. I know everyone has a crapload of crap on their plate and I hate complaining when we all know too well exactly what "sucky" means! My poor 14 year old just looks at me and says "any better?" I lie and say "the same'.. I do just a few things and fall asleep. I fell asleep after dinner for over an hour. Laying flat seems to take the pressure off. I don't see why a trial of Ibrance would be out of the question. I ask every time I am in the office and every time he says no.
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Rose 2nd opinion is looming
Brenda trip is coming, yay, need 2 get away from these stupid people. Pain meds r fixed
Bbq tomorrow at my sons for my new ggd, welcoming her to the family. Cant wait.
Happy weekend
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Oh Calico....I'm so sad for what you're dealing with & hope the brain mets are blasted to smitherings. The crap this disease puts us through is completely, utterly unforgivable...when will it stop. I'm at a loss for words, other than to say I'm sending love & prayers to you...and the rest of the band of sisters. Hmmmm...wonder if they made a movie about the women who go thru bc war, would it be as popular as all the guy war movies??? If you ask me, having to dodge a few bullets sounds like a walk in the park compared to what we gals face to stay alive! Not that I don't appreciate what our heroes did/do for our freedom...just sayin. And btw...my daughter gave us the choice of seeing Indigo Girls or Bruce Hornsby. I chose Hornsby because we've seen the Girls a couple times & thot DH would choose Hornsby. Yep...she gets the tix & DH says he'd rather see the Girls. So much for thinking...I'm sad. Glad for you, though.
Rose...Seattle traffic sucks too. And I'm wondering who we can call to get Ibrance for you...you can be the onc's personal trial! Seriously, like M360 says...it's obvious the knowledge gained here...real science...should be appreciated. I say copy off some results posted by ibrance sisters & show it to your drs!!! Prayers for you feeling better...soon!!!
M360...WOW!
Blondie...I know you're going to have a great trip...but Seattle is so hot & muggy, I feel like I must be in the Everglades!!!
Brenda...Oh Gawd...port problem...one of my fears. I watch like a hawk & lately I've been getting newbies & I question everything. I bruised for the first time 3 weeks ago & it freaked me out...but what you've experienced...I'm so sorry. I have found myself angry lately...weirdly so. I finally asked my gp what to do...everyone, everything irritates me & it's so out of my ordinary, it's scary. Put a msg into a counselor she suggested. The msg stated about 10 times, who to call if you're in danger & need immediate help...guess I'm not that bad off...yet. But I yell f... y.. quite often. We live in an apt so it's very muffled but when I'm at out country home...I let it rip. Doesn't really help much. Thoughts of & for everyone.
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Ronniekay- Ohh I love Bruce Horsnby- got lots of things on my Ipod. Maybe after the CT and MRI my onc will change his tune. I was hoping for constipation as a cause to the gut issues... but no I finally got relief on that score and my belly is still as tight as a drum. So there's another reason..ascites? Odd cause my liver labs looked ok. WTH? My DH, DD1 and DD3 all went to a festival to meet friends. They should have a good time and BBQ later. It finally cooled off, although it's muggy. I just think I should be allowed to try Ibrance and I am glad you all think so too.
Calico we're in your back pocket. Hope the treatments go well. Blondie have fun at the BBQ for the ggd! How do you know a 2nd opinion is looming? Hope you are right. Your happiness over the upcoming trip has been fun to watch. We all hope your trip rocks! ((((HUGS)))) to anyone who might need one. Be well.
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Cause i am smart, lol
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smartie pants... this so sucks. You better be right.
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If you aren't right, we'll hunt you down in Florida...save us a pool chair :-)
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I finally called onc in a fit of discomfort and hopefully will get a paracentesis to remove some of this fluid, or whatever it is. If this is malignant ascites.. the prognosis is quite poor, regardless of what they do. It makes me angry that when I just had bone mets in January and went to Mayo's in Jacksonville to ask about Ibrance - I got shot down. I got shot down when I got home too. It was like I am forced into taking the nasty shit first even if it kills me. Now it might be too late for Ibrance. The patient has the last say. There is always DWD if I sell some stock in my retirement and cough up 3 grand. I am feeling disgusted.
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Rosevalley, I am sorry, that is so effed up I can't believe it. What is DWD?
Hi blondie
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Death With Dignity- assisted suicide for terminal patients. It is legal in Oregon but not covered by my Catholic Insurance. It is criminally expensive 3,000.00!
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Count me in on Bruce Hornsby!!! "Mandolin Rain"! I love it, but call that kind of song "slit your wrists music."
Like Tracy Chapman with "Fast Cars." Tears my heart out! So cathartic! I saw Hornsby in Concord, CA many years ago. Large outdoor venue, not the best to hear him at. He's so subtle. Hey, RonnieKay, don't be sad! It's time for some Hornsby!Rosevalley. we're with you wherever this goes! Hugs and prayers flying your way! Seeing you relieved from your misery!
Brendatrue, sooooooo sorry about your port mishap. Mine's gotten red and sort of angry looking. The onc prescribed antibiotics should it get to hurting.
Blondie, don't forget the sunblock! xoxoxoxo Calico
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Ok calico
Thanks
Rosie so sorry, cancer sucks
Hi tom
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Calico- how's your radiation treatments going? Are you doing WBR? Mandolin Rain is a great song.. I love your description - "slit your wrists music!" Ha! "Break your heart too." Hope your treatments are doable. I'm praying they can get me in today.. doubt it though. It's pretty short notice. All this fluid is miserable.. maybe tests will return today. Considering what I look like and feel like, the results will not be good. But we are all used to that. Just kind of sit there and accept it as part of life in cancerland.
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got my results- although they don't say it -the end result of the findings is malignant ascites. My omentum has "increasing nodularity and may represent omental caking and carcinomatosis." Lobular cancer likes to mets to the gut. There was a large amount of free fluid, ascites. I get tapped tomorrow thank heavens. They will send it to pathology and confirm. This will be a repeated thing. There were a couple of tiny nodules on my right lung 2mm and 3.4mm. There was some weird 12mm thing on the dome of my liver that might be a met, they're not sure. There were multiple skeletal mets spine, cervical, thoracic, sterum bla blah.. old news. No intercranial mets in the MRI yay, just multiple calvarial metastases. So I officially moved out of the bone mets club onto icky territory. Fun Fun Fun in cancerland.
I doubt Ibrance would do me squat now. The window for that was closed in January, shit. Thanks Mayo's and my doc here - Mr. "NO" both of them. I never get get what I need, when I need it.. always jerked around until things get worse and worse. You have to take all these drugs first... so they blame me. If I accepted feeling crappy and dutifully took my meds and shut up. I was so hopeful that Ibrance might give me a couple of years it sounded so promising with out the awful side effects. I wanted to try it - denied. Nope.. prognosis on malignant ascites is 5.6 months. Sounds like chemo is the only option and repeated taps/ pallative care. I hate chemo.
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Rosevalley, I'm sorry to hear of your recent results. Your frustration is so understandable. It still kind of surprises me, four and a half years into this, that the medical field is not anything exacting (it seemed like it was, before I had to deal with it on a long term basis). Its sort of, let's try this.....oh, not working? Okay maybe that.....well, it worked for some but no, it won't be approved for you.....! Before bc, I had such a false sense that life, the world, was in control. With disease, I learned otherwise. I think the realization of loss of control is what causes me anxiety. Because I realize it's not just our health we can't control, but there really isn't control in many other areas, either.
Gosh, I hope I'm not depressing you. Your post just caused me to tap in to what I am feeling. Hugs for you this evening.0
