Bone Mets Thread
Comments
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Chelle - We all know the domino effect, where one pillar of our lives collapses, putting stress on the next and then one goes and two more go ... and suddenly everything is up ended. I am so glad to hear from you. We've all been there. It's very tough but I can just by the tone of your note and that you are very strong and everything will start coming back together soon.
There are many of us praying for your family tonight.
>Z<
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Chelle. How great to have everyone by you!!! What a long road with your DH. I hope his surgeries go well
I saw my MO today and everything seemed fine and now I just saw my TMs on line. OMG. I'm freaking out. It's the biggest jump ever!!! I know I've only done 1 cycle of the Halaven but I would have thought that it would have caused my TMs to only go up a small amount. My TMs are always spot on. Left a message just now for my MO. I need to get this beast under control!!
Babs
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babs, i'm on halaven now too....i think our start dates were close....how much did your TMs jump?....could it be because the cancer cells are dying so there are more in your bloodstream? ....i havent kept very good track of mine (maybe thats a good thing)....it seems like this is such a huge stressor and these numbers can go either way from what i can understand...even if you "know" your numbers couldnt a large release still be a good thing?.....i'm sorry you are stressed over this and you will get lots of prayers tonight......i hope you all sleep well
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Babs could it be just flare ups from new treatment? I would ask my MO but don't worry too much I had the same thing on Taxol.
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Babs based on what - everything was fine? The scans?
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Babs - there are a hundred solid reasons to relax and wait and see. The first being that nothing works that fast ... and the second of course is that TMs go up for a bizzilion reasons unrelated to growing cancer. Reliable in the past may not predict the future.
>Z<
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Thank you all for the encouragement. My MO wants me to have my next infusion Thursday night and then to scan on Friday since I'm off that day. Nothing is definitive until I get the scan results but thus far my TMs have been spot on and they've never gone up unless there was progression. In the meantime she's looking for any trials there could be available for me. Ugh!!!!!!
Babs
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I hear ya I hear ya! What about checking for PDL1,(would have to be from a biopsy) and possibly use immunotherapy? I just read something about that. I'll send you a PM with info. Doesn't mean it's for you, just throwing ideas around.
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Momall-I did have that checked in my liver biopsy and it's not the mutation I have. Knowing my MO she already sent my info to every one at MSKCC and any other places in the city that do studies. Now I have to wait and see. Haven't told my DD anything yet-she's away ad I don't want to stress her while she's pregnant!!!!
Thanks,
Babs
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Good idea, Babs. She doesn't need any stress this early in the game. Play it cool.
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GG, Hi, This is my 1st post, as I just joined - I'm still filling in profile history. I'm cheering for you, thanks so much for checking in! I live in the Pacific NW. Now IV. Juicing homegrown organic veggies! Have you seen the abundant butterflies this year?
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Babs, I'm sorry that I can't remember, but did they recheck your receptors when you had the liver biopsy? Praying the Halavan does some major kick ass moves on the beast.
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Jen. Yes all was checked with my biopsy. Still ER+and PR+ her-
Since my TMs are rising so quickly I'm assuming the Halaven isn't working at all but will know for sure after my scans. Just don't know what other treatment options there are. I'm going through them sooooo quickly!!!'n
Babs
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Babs, hang in there. It may be a flair since it's a new drug for you. I know how hard it is on family. My big family lives around my blood work and scans. You are in great hands at Sloan. Keep me posted. I'm thinking of you all the time!!
Ibrance gave me a huge flair but then I had found out the liver mets were growing. Yesterday I got my blood work back and when I started Xeloda my TMs were 2600. Alk Phos was 500. After 4 cycles of Xeloda my blood work is normal except for Alk Phos. 25 points above normal. But I still can't believe it, my TMs are 12. I keep looking at these results in disbelief.
Your DD definitely doesn't need the stress even though she probably is thinking of you every minute if she's anything like my mom and big family. It's so hard on our families. They just want us to get better.
Keep me posted. Thanks for all your help. Keep hanging in there will be an answer soon I just know it.
Hugs to you,
Anita
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Babs~ sending prayer for you to find just the right combo treatment. To knock that sucka out! You have been through so much. Hugs ~M~
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Babs, I don't see Abraxane on your list yet. Maybe they could try that. Yes, you will have hair loss with that and lots os fatigue, but I hear it's very tolerable.
Sending prayers.
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Babs, Lita is correct, Abraxane is generally tolerable. I just finished 5 months, minimal side effects, no fatigue for me and it worked really well.
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Babs we sound Ike a broken record but I too recommend Abraxane I'm on it and my TMs keep dropping. No mayor se's except nausea and gerd at night. I I'll keep you in my prayers.
Aurora
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Babs....thinking of you and sending prayers your way. You have been so much, it's time for some good news!
GraceDD, welcome. This is a wonderful site, the ladies are all very helpful and knowledgeable. There is so much information here, makes this journey a little easier.
Diane
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Babs so sorry you have to wait this whole week to get some info. Yep, your DD needs this time to relax, and when you do tell her, you will probably know already what your plan is, so she could actually understand the picture better. Hang in there.
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I can only imagine how frustrating it is to wait a week, Babs, a tossed if Halavan is working. Have you considered a second opinion with the team at the Avera Institute? From my understanding it's somewhat similar to the Match trial but they analyze your biopsy material and come up with a cocktail that should be responsive. I'm thinking of you and hope this Halavan is doing its thing.0
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I'm back from a wonderful trip to Costa Rica. I feel so blessed to have been able to go and to do so much. I feel great - strong, relaxed, refreshed. I have my scans starting Wednesday and have every reason to believe they will be ok. Also having an ultrasound on my mx side as I had been feeling some pain there before my trip (hoping it's just nerves firing or my bra or something) and also an ulatrasound of my right leg to rule out a blood clot as the source of swelling in that leg. I'll miss the zip lining, atv driving, and floating in the ocean while butterflies fly overhead, as I just jump back into reality.
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Jen, So happy that you were able to go on your trip and able to do zip lining! Good luck with scans this week.
I wanted to share these 2 drawings with all of you.
These are chalk drawings on cement. Aren't they fabulous? It was a beautiful day here and so we decided to attend the art festival. The top one is titled, STRENGTH. I thought the artist captured it well. The drawings stay until it rains and then they are washed away.
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jen!!!... i'm so jealous !!!...floating in the ocean with butterflies...add that double rainbow and it may just be my heaven....take me with you, lol
linda,...what a shame that they get washed away(like in tibet when they teach you nothing is permanent) they are beautiful and its so sad that beauty will fade away..
big hugs to all my fading beauties....its such a shame
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Sending you lots of hugs and prayers Babs!
To everyone having scans this week, you will be in our thoughts and prayers! Think of us all in the room cheering you on!
Hugs and prayers everyone
Claudia
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Babs, my MO thinks my TMs are accurate also. But when I started faslodex and Ibrance, my TMs went up from 700 to 1300 then to 2500, then to 3500 and finally to 4900. My MO was all in a fluff suggesting zeloda or halavan and sent me for scans. There was no progression and some improvement so I decided to stay the course and finally my TMs went down enough, I think it was the 4th cycle, to wipe out the increase of the last two cycles. So tumor flare is a definite possibility.
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We are all thinking of you babs! They will come up with something to get you rolling again.
I'm envious too Jen. Just floating on the ocean watching butterflies. Perfect thing to clear the mind.
Linda Wow, those chalk drawing are fabulous! Kind of a cool concept to let them wash away...
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Jen- its unanimous- we're all jealous of your floating on the ocean seeing butterflies.
Linda- thank you for sharing those chalk drawings- they're really amazing!
Cive- My MO and I are both hoping it's tumor flare. But, to make sure, I'm having the PET/CT next week. If there is no progression then I'll continue on the Halaven. If there is progression I don't know what she'll have me take/do next.
I hate the uncertainty!
Babs
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Good Morning,
Jen I am so happy you could get away. It really clears the mind and helps to forget all the issues we face. Glad you could have a good time!! Nothing like the warm ocean to relax you.
Linda, the chalk art is beautiful, I have never seen that before. It is beautiful!! Thank you for sharing it.
Always thinking of you Babs!! Keep us posted.
Hope everyone has a good week and good news.
Hugs,
Anit
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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
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