Bone Mets Thread
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Just to make you smile and feel some peace today. I took this in Botswana, Africa on the Chobe River. A peaceful moment with mom and baby. Enjoy, Anita
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Linda, those chalk drawings are incredible. I wonder how long it takes the artists to do them.
Anita, I've been loving all of your photos. My traveling companions and I especially loved the smiling baby hippo from last week. That's what we call my son when he's swimming because he stays under the water so long. Then pops up usually like this: (photo credit to a talented young woman in Costa Rica)
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Jen~ very sweet pic, such beautiful eyes and it seems as if they are smiling at you. Very cool! So handsome! Ahhh to be young and healthy again. Hugs ~M~
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Jen, beautiful photo and beautiful child. Thanks for posting.
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Photogirl - I love your photos, they are always a bright spot in the day! This one is particularly sweet!
Jen - That is so cool! What a treasure!
Let's have a good week everyone!
Hugs and prayers
Claudia
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Jen, your son is going to have to beat the girls off with a stick when he gets older. Men with distinctive, beautiful green eyes are very rare.
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Thank you Jen and Claudia.
Jen your son is gorgeous and he is sitting in the water just like the hippos do!! Sometimes nature just makes you smile and relax! Glad you enjoy them.
Anita
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Beautiful pictures by both Anita and Jen!!
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I was flipping through threads and realized nothing from Patty still. Has anyone heard anything? Really getting concerned.
Hugs and prayers everyone
Claudia
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I was flipping through threads and realized nothing from Patty still. Has anyone heard anything? Really getting concerned.
Hugs and prayers everyone
Claudia
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Claudia,
I was just wondering the same thing. She hasn't been on any of the game pages I've seen her on usually.
Patty??
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Jen-wow your son is such a beautiful boy!!! Thank you for sharing the picture with us.
Anita- I loved the hippo picture-thank you!
Patty- are you okay??????
My DD came home from Paris today- she looks so good- she has a little belly now!!!!
Babs
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Jen awww that beautiful picture is so calming. Love it. Great moment. So happy for you, that you had this beautiful trip. Fingers crossed for the scans.
Babs no wonder you were busy!! !! Enjoy, enjoy.
Anita indeed i've learned that elephants are brilliant. Did you see the Youtube clip with the family saving the baby elephant? Thanks for putting a smile out there!
Patty, Patty are you just tired?
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man oh man I just wrote out a huge post and it disappeared such a pain.
So here it goes again first Jen your pic is awesome your some is a good looking boy but then look at his mama no surprise there.
Anita lovely picture very peaceful just what I needed today.
So as many of you know I'm currently on Taxol and it seems to be working well for me. Now however because of my POG test results my oncologist thinks I may have the BRAC gene so I will be tested for that one on Wednesday . Her suggestion was to add carboplatin (I know I spelled it wrong) or join a phase one study. This study is usingCX5461 a chemo drug to target specifically my type of cancer. The study oncologist told me there are eleven people with mixed cancers Canada wide on the study and one has shrinkage and a few more are stable on this. It's an intravenous chemo I would have to get it done day one and then day eight every four weeks. I'm really torn about this I would have to get a ton of scans bone ct pet X-rays etc. Also another biopsy which sucks the thing that really sucks is the blood sample required. Any thoughts would be really appreciated.😊
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Wendy why can't you just continue with taxol? Why try another chemo? And why something Phase I, I am not even saying it's wrong, these are just my questions? Do you have such a rare type of BC? You already used up other treatments? What makes him thing you have BRCA? But if so, it's a BT, and it takes very little time you could find out right away.
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man oh man I just wrote out a huge post and it disappeared such a pain.
So here it goes again first Jen your pic is awesome your some is a good looking boy but then look at his mama no surprise there.
Anita lovely picture very peaceful just what I needed today.
So as many of you know I'm currently on Taxol and it seems to be working well for me. Now however because of my POG test results my oncologist thinks I may have the BRAC gene so I will be tested for that one on Wednesday . Her suggestion was to add carboplatin (I know I spelled it wrong) or join a phase one study. This study is usingCX5461 a chemo drug to target specifically my type of cancer. The study oncologist told me there are eleven people with mixed cancers Canada wide on the study and one has shrinkage and a few more are stable on this. It's an intravenous chemo I would have to get it done day one and then day eight every four weeks. I'm really torn about this I would have to get a ton of scans bone ct pet X-rays etc. Also another biopsy which sucks the thing that really sucks is the blood sample required. Any thoughts would be really appreciated.😊
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Not doing it
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I think it's time to change oncologists again this one doesn't read through my scans with me she has given up is the feeling I'm getting. I'm so active and ready to fight and I feel the quality of life sentence has been thrown at me once too often.
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my girl and grand baby just reminded me of the elephants. Just love the photo Anita. You are so fortunate in all your travels and adventures !!
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wendy....always trust your gut....maybe youre just a science experiment to her now.....i see you said no to the trial but i wonder why the blood has to come from the arm as opposed to your port.....your right that is a lot of pokes...good luck with these difficult decisions
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wendy -
i wouldn't switch if taxol is working and you can live with it. it's great that you have options, but there will always be trials for this and that. maybe even this very same trial, with the protocol and side effects and outcome better understood, will be there for you several years from now.
i am interested in trials, but they are a great deal of self sacrifice. days in the hospital.
that said, a huge shout out for the ladies who double down and do these trials. thank you.
>Z<
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Z your right part of me feels terrible that I don't want to subject myself to this especially looking at my 22 year old daughter. However I need to have a plan moving forward . Just read today in a study that chemo also contributes to blood clots dammit. This oncologist today after seeing my list of alternatives was dead against all of them. Vitamin c infusion waste of money. When I countered she said yeah naturopaths just want to make money. I look at her and said doesn't the pharma industry want the same ? Don't you? Your Christian Dior suit doesn't look like it was cheap😜 I need a new oncologist who is will to think with an open mind will not be an easy fix.
How are you doing these days Z?
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Wendy, Maybe wait for the BRCA results as that could potentially change your treatment. Most of us vote for second opinions and now may be a good time. When are your next scans?
Jen, Your son is adorable.
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Lindalou I just had a scan in June which showed shrinkage on all soft tissue and an increase in the bone mets but the intern figured it was flare ups from the treatment and not to worry.... Next scan will be sometime in September I would think.
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Wendy, I agree with Lindalou. It seems premature to make a decision before the final results are in for BRCA. It sounds like it is a good time to get a second opinion. Taxol seems to be working for you right now. Your posts indicate that you feel so much better than you did before you started the treatment. You seem to have more energy, a better appetite, and are getting back to some of the activities you love. Your last scan results sound pretty good. I just don't understand why your MO would seem to be giving up on you at this point. There are still other treatments out there, as we all know. As far as the clinical trial is concerned, I have been following Animalcrackers' thread where she posts the details of the trial she is participating in. It seems to be a huge time commitment, at least at the beginning. I applaud her for taking part in the trial because it will provide knowledge and help direct future treatments. I also appreciate her posts because they give so much information to those of us her read them. That said, it sounds like a clinical trial might now be best for you right now. Remember that you are in charge of the direction your treatment takes. No one can force you to do something you don't agree with. Take some time. Get a second opinion. We are right there holding your hand.
Hugs from, Lynne
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Jen, what a beautiful boy! And Lita is right, men with those intense green eyes is rather rare, so captivating!
Anita, again love the photo!
Wendy, I know the feeling of thinking your Onc is giving up on you and only going thought the motions after the month+ I just went through. I just now have run through the AA combos and I guess need to move on to chemo. She told me, after declaring "this is the beginning of the end", that many women decide they don't want to endure IV chemo so decide to employ hospice at this point???!!! I was like "WHAT"! That's it? No upbeat encouragement to try something else...She then asked if maybe I wanted to move to another practice since I now live in another town to which I was very ready to say YES!
Since that time things have moved fast. I have a new GP who so far I like very much, have been scheduled immediately for CT, MRI for brain just for baseline status, port consult, gastroenterologist consult (which should have happened in the first 2-3 weeks I was complaining about the painful bloating ect.) I had a paracentesis twice and immediately upon calling which was such a relief I can't even tell you. All of the DR's I have dealt with so far have been kind, compassionate, and decisive! It's been a very positive experience for me so far.
Lynne, I too wonder why they seem to give up seemingly long before we have exhausted our options.....
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Hey girls! I am new to this thread, however have been on a few boards since 03/2011.
In 01/2016 I had a reoccurance of TNBC, lungs and sternum bone. I am doing ok, last scans showed no cancer in the bones, however the past few days I have had a lot of pain on my tail bone...has me scared.
I will be doing scans next month and possibly start Cisplatin.
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OMG, Artist! What a bunch of crap!
Is it because you live closer to "the sticks" than we do, and that's what hick MOs do up there? That's totally ridiculous!
What you do next will only be your SECOND LINE OF Tx after the AI's Femara and Faslodex, for God's sake. As you can tell, I am absolutely FURIOUS on your behalf.
Even my MO at Kaiser (which has good and bad feedback, as every place does) has a better outlook for me than yours...and you know how extensive my tumor load was a little over a year ago. She and I haven't even tried Aromatase Inhibitors yet. She has high hopes for me even with all my organ, bone and soft tissue mets. She declared, the last time I saw her a few weeks ago, that if I am stable (accounting for even a teensy bit more bone progression, because that seems to be what my body does with cancer and Xeloda) we're gonna try a course of AI's first, THEN go for the heavy duty IV stuff. She wants me to have a break and be able to do a little more traveling and live life b4 saddling me with courses of Halaven, Taxol, Abraxane, etc. She says we have PLENTY of arrows left in the quiver. Sounds like your MO thinks there are practically no options left, and that's just not true!
I go to a St 4 support group in Palo Alto twice a month, and there are women who have had MBC for MORE THAN 7 YEARS! Some of them have gone thru several lines of Tx already, and some of them have successfully battled ascites, and are still here to tell the tale. One of the things these veteran women tell me is to go and get a second opinion either at Stanford Univ or UCSF. These two university medical centers are the best in Northern California, and YOU deserve the best, Artist.
As much as I love Dr. Leonard "Bones" McCoy from Star Trek, he used to irritate me every time he would say, "Well, I don't know, Jim. I'm just a country doctor!" And this is what your MO is reminding me of. She's not thinking two steps ahead at all.
As Z says, PLEASE advocate for yourself and get another opinion.
Lita
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Hey Lita you can be on my team any time!! Love your spunk!
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HaHa Cathy! Lita is a spunky one for sure! I almost think with my small town Onc it is more of this Lake Tahoe elitism attitude. She is highly educated, young and very direct. Like I said in another thread I just think her "doom and gloom" directness does not serve a patient well and does make me feel like she is only going through the motions with no passion for my well being. Almost clinical and cruel.
Thanks to this website I have learned soooooo much including how many women endure WAY more than I have been through yet and persevere. Every time I quote something I've read she tells me not to "GOOGLE" things as it is misinformation...(Like the time we argued about whether there was a lower dose of Ibrance I could try. She said NO which was wrong.)
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