Topic: Bone Mets Thread

Jul 17, 2017 08:01AM PHOTOGIRL-62 wrote:

Just to make you smile and have peace today, I'm posting one of my favorite tender moments I experienced in Botswana on the Chobe River. This to me brings some peace and serenity to my life when I see things like this. Enjoy!

Anita

Jul 17, 2017 09:07AM jensgotthis wrote:

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)

Jul 17, 2017 11:00AM JoynerL wrote:

Jen, beautiful photo and beautiful child. Thanks for posting.

Jul 17, 2017 01:13PM Lita57 wrote:

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.

Jul 17, 2017 07:15PM Lynnwood1960 wrote:

Beautiful pictures by both Anita and Jen!!

Jul 17, 2017 07:30PM - edited Jul 17, 2017 07:31PM by Bigbhome

Jul 17, 2017 09:24PM babs6287 wrote:

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

Jul 17, 2017 10:34PM Wendy3 wrote:

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.😊

Jul 17, 2017 11:14PM - edited Jul 17, 2017 11:15PM by Wendy3

Jul 17, 2017 11:47PM Wendy3 wrote:

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.

Jul 18, 2017 12:02AM Nan812 wrote:

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

Jul 18, 2017 02:43AM Wendy3 wrote:

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?

Jul 18, 2017 09:51AM Wendy3 wrote:

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.

Jul 18, 2017 03:03PM artistatheart wrote:

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.....

Jul 18, 2017 04:42PM - edited Jul 18, 2017 04:49PM by Lita57

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