Bone Mets Thread
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Gracie,
You have been on my mind all night. I've had the very same thoughts. "What's the opoint. I'm not contributing anything." But we don't know how we touch others' lives. There are probably people who look to you for strength, spunk, and kindness.
Our often isolating condition keeps us inside too much. Try to take time and effort to get outside and soak in this beautiful Earth. Look for those miracles.
Please ask you MO for a counselor or maybe meds to lift this heavy weight.
Hugs and prayers.
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Momall,
I did have progression. Pretty significant progression in T1, but without much pain. There were other bone progressions. My one brain lesion has been quiet so far. I don't have mets anywhere else.
This is a new philosophy for my MO. We have previously squeezed every month out out of treatments. (Except Faslodex, which did nothing). Xeloda started with a HUGE drop in TM and scan results, but quickly turned around and lost power. So, she's switching quickly and hitting it hard.
Back to losing hair, etc. We'll see. I had such hopes for X. I've decided my mets are smart but slow :-)
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I live in Kansas. Cannibas in any form is illegal. I don't even know anything about it really other than it will probably never be legal here
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Gracie, if cannabis is illegal over there, you need to call your MO and get some help. If your MO doesn't help, SWITCH. We are human beings, and we don't deserve to suffer like this.
Praying for you,
L
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Gracie, sometimes I feel like this has taken so much of the joy out of my life. I'm always worried when I make plans that something else will come up. I get depressed thinking of down the road. Then I tell me husband and he says you are here today and none of us know what can happen. Live day to day. I know it's hard when you can't be free from worry inside yourself everyday. I think all of feel this way many times. Don't give up!
Linda, I'm so excited about this trial. I think that there is going to be a break through with all of the new studies. Keep us posted!
Momall, hope the scans show improvement, that would be so wonderful!! Fingers crossed.
Lynne, hope you had a great vacation. I'm hoping to go out west in October for a week and if all goes well one of my friends in Africa has offered to take me and my husband around for a week then give us a truck to finish out another week. The big plus is my husband had enough air miles to fly free!! I haven't laid that one on my MO yet😄 Hope he doesn't say I can't go! I always said if I had a year to live I would live and die there. Africa has my heart, there is no place like it. We will see!!
Hope everyone else is hanging in there.
Hugs to all my wonderful sisters!!
Anita
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Hi all. I got into the study. I'm thrilled. Now I hope it works on me!!!!
Still waiting for my scan results. Hoping tomorrow
Bab
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Great news babs, we are all rooting form the stand s for you. I hope the SE's are very minimal and the Tx kick butt!
Gracie, we all question here and there how much we can endure and why we should....I do hope this is just a dip and you find strength and hope soon to continue on. We are all thinking you.
Kaption, I start Abraxane next week. My new Onc has the same view. "let's pull out a big gun and put out the fire". So I have high hopes. I've heard it pretty do-able but I guess we never know. I could use an influx of energy and strength back.
Lita, thanks for some of the CBD recommendations. I've been playing around with a few products, mostly needed for nausea and appetite, but haven't found my perfect niche yet.
Wendy, you are an inspiration for sure. I still hope to find my perfect combo of MJ products and get back out there enjoying some life.
Linda, 8 years is very uplifting news and than you for being willing to join that study!
Have a great vacation Lynne!
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Artist, I start next week. We can compare experiences. I certainly need some energy!
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Hello good people,
I am struggling with some decision making. I have been on Letrozole since mid February. Last blood test showed rising markers from previous one - 295 to 360.
Onc wants to wait a month. This past week I have had a lot of sacral pain and joint pain in right hip and leg and upper rib pain. I am worried that the Letrozole is simply not working. Can it really just fail so fast?
I am thinking I should just have a scan.
Need some input and thoughts.
Chats
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chatsworthgirl - what was the date of that last TM test and the date of your last scan?
gracie - try asking for palliative care at your cancer center. some oncs are not totally aware of this specialty so you have to ask for it in different ways to different people at your center. to be clear, it's not hospice (at all). it's a specialty that looks at improving QOL for people living with cancer. pain management is a very tricky business and that is one of the areas that they specialize in. i was going to second what lita said (get your onc to do something about your pain or find a new one) but i'm worried that not only your onc but oncs in general are clueless regarding pain management.
"palliative care" is the code word for the specialist you need. and if they start talking about hospice ... tell them no, you're not planning on dying, you are planning on living a long time but you need some help managing symptoms of your condition.
hugs. i think about you daily. don't let the pain tell you that no one cares about you because we all do and we're terribly concerned.
>Z<
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Chats I was on Letrozole for a month didn't work at all
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Z,
Last tm was 7/19 and last scan was late February. I think I will just go ahead with another scan since it's been five months. It was very disappointing that my markers had leveled off then dropped then this new lab had it going up. Onc said could have been new lab and assays.
Don't know what to think about the two "flares" of pain I have had. Low back pain was really bad then leveled off. Feels like sacrum is tender.
I have done a lot of heavy work stuff so maybe I am just overworking and Letrozole doesn't help. Hope springs eternal.
Not having a good day I can tell you. Very dark thoughts.
Chats
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Wendy,
Looks like Faslodex worked for you? Onc suggested that one to me. Also looks like you have not been prescribed Ibrance. I have a bottle sitting in my bathroom. Reluctant to start.
Chats
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Chats ... just get a scan. the mental anguish is not worth the wait given the symptoms you are having. The tumor markers changes don't mean much to me, my understanding is that they need to double or more to be meaningful. But pain is not good and five months is a fair bit of time between scans.
That said, we can have pain for many reason. I am expecting nothing but peace of mind to come from this scan.
>Z<
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Thank you Z,
I feel the brush of an angel's wing.
Sometimes I feel like such a wuss.
Chats
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Gracie~ you know the texts will be flying your way! I hope you know you're always in my thoughts. I am always sending strength and prayers. Your way. I am doing a lot of that lately. I am hoping you'll find your groove again and soon. It seems like this stuff waxes and wains. At least for me.
For the ladies who are getting ready to tango with Abraxane, it's not nearly as bad as the AC chemo. But it's aggressive. Not a picnic. Ask the nurse to slow down the drip or you may experience a pretty good head ache. Please drink and eat during the infusion also. It helps tremendously. Also take Aleve the day before and the morning of and the day after. Along with the good old Claritin. You will most likely be down the day after. Sometimes as you adjust it gets easier. It depends on how many you have to have. I had 9. Pay attention to the neuropathy, it can get pretty bad. Small meals always worked best for me, my hair came out after two infusions. My Scalp felt a little burnt before it happened. Came out quickly. It did go a good job. But it is chemo. It is taxing on your body. My toe nails will most likely never recover. I wish you all nothing but good luck with it and may it kick cancers rear end! ~M~
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Kaption wow, T1 could be very painful, good that Onco is being proactive.
Babs that's great. Hope for a wonderful response!!
After much anxiety about the scan results, I got a phone call this evening that some lesions are new, some a bit better, some stable. Same old same old. BUT Onco will consider it as a good sign, (THAT IT'S NOT terrible) and wants D to continue on the trial. She still needs to do the Brain MRI. I did not see that report yet. She said I should not get scared when I'll see it. Hmm. Let's just say none of us are convinced it's great, but Onco said she did not want D to rush out of this trial, in about 6 wks new scans.
Got Foundation One results back, this pm also, she has a large tumor burden and many mutations. Most they don't have clinical trials for or treatment. I gotta look into it in depth and get some education on it. Anyway nothing is being done at this time. Also, former Onco is away for 3 weeks, and the new Onco(trial doc) is away for 2 weeks. Lovely. I could try to communicate via email, sending messages via assistants, but... Also, Report is in: She is still triple positive. BUT the FISH results is 2.2, so do I worry that for this trial she had to be +++ to best respond to this treatment, how accurate are these things anyway, 2.2 is what they call equivocal but there is also something about what type of cells etc...Onco said it's triple positive.
Also, Wendy and for the other ladies that said they lost what they wrote in the paragraph, did you ever try CTL Z (it brings back what you just lost), or I will write sometimes on Word and then cut and paste, I had this happen to me also many times, and it's very frustrating.
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Mom - I don't believe the diagnostic tests or the studies that determined the efficacy of this drug on FISH+++ are that accurate that they can distinguish between 2.2 and 3. The trial onc seems pretty sensible. I do think docs can give up on treatment protocols too soon and over-interpret scan results towards the negative, but your docs seems level headed. I wish the scan results were more of a slam dunk, but I agree that is not bad. Fingers crossed the brain MRI report is short and dull.
You are in my thoughts ...
>Z<
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I thought so too re: the results. It does also specify the #of Mean Her2 signal which is high and CEP17, i am learning learning. There are quite good sites explaining it. And I gotta run through the 54 pages of the F1 report!
How are you feeling Zar?
Anita I sent you a note re: the PET/CT i've never seen a less capable study. And trust me, i've seen way too many of Dani's Pet/CT's. You were so kind in saying your DH would be willing to lend an ear, so, i took advantage of it. Thank you, i hope it's ok.
Dani feels exactly the same way about planing, even this week she could not plan because she was waiting to hear of these results. She would like to take some days off here and there, we'll ask if she must have the blood work done every week, or if she could skip a week or so and have a bit of a rest...
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Momall. If Danis results were bad she would have been right out of the study. Studies are very strict like that. So interpret the results as A-Ok. I'm hoping the brain MRI shows stable or better!
Babs
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Chats, Letrozole can make you feel miserable and ache with pain. I was on Faslodex for 6 years and it worked for me for a long time and it may work for you. Sounds like your MO has prescribed Ibrance. I say give it a try. It has helped many here. I'm on cycle 4 and the SE's are leveling. Don't be afraid to give the treatments a try. You can always stop but do have another discussion with your MO to share your concerns.
Moma, with all the treatments Dani has had, the results sound within a reasonable zone and promising that she can stay on the trial. I agree with Z about the FISH. You are an amazing supportive mom. Are you getting any sleep?
Babs, Speaking of studies, good news about getting in yours!
I spoke to UW researcher on the phone yesterday and will meet him in a few months. Had an amazing discussion. HIs study will move ahead in about 2 months and he hopes to have a website up, ethics review completed etc. When he notifies me of that I will post it with his permission for those of you wo may qualify. He is interested in women who have had mets for a long time and is looking at environmental, genetics, life style etc. He is most interested in me as my sister died of metastasis ( de novo) and most likely my mom as we reviewed her path report. My sister and mother both banked their DNA in the late 90's and here we are today, with a researcher who is going to use those samples ( and mine) and see if there is a link. Many of you here may qualify for his study and I will forward all info as soon as I get it. I know some of you are in the Metastatic Breast Cancer Project, myself included, and this will be similar but he didn't share his path quite yet.
One last note.....while I was waiting for my radiation yesterday, a man sitting next to me started talking to me. He was in for radiation as well. After I told him this was my fifth time through, he got up, turned around and gave me the biggest longest hug. It was wonderful. Nurse came to call me in and she just stood there and let us hug. Pretty moving for me. I'm a lucky girl.
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hey momaallthetime,
I had a scan about 6 months and they will do a scan next month, only cause I kept on bugging them to get one, they said my tumor markers were normal and my echo was good and until I get new symptoms why fix what's not broke.
Paula.
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Babs thank goodness for this study I'm so happy for you this will be the one. Grandson here you come😊
Mom I totally agree with Babs they would have her off the trial very fast if they thought it wasn't working that's been my experience as well. You are an amazing mother I envy Dani that she has you in her corner.
So I have been listening on a British podcast this morning to an intergrative oncologist (I need one of those) on diet and supplementation the positives and the not so positives. When on chemo avoid all antioxidants ( green tea, vitamin c etc) will hinder the chemo drugs efficiency. Also something I found interesting if we have high levels of insulin in the body this promotes cancer growth as well. So periods of fasting are supposed to be beneficial on slowing tumour growth. Balancing blood sugar was always on my radar but I didn't want to fast she suggested over night fasting so early dinner and no snacking. The fun is just leaving my life in every form lol. Will try it out though.
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Thank you all for always being in my corner with me!!!!!
Bab
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MomATT- It seems that Dani has a great MO. Clinical trials are eager to ditch non-responders because they skew the numbers downwards, and overall efficacy of treatment depends on such a small number of people in the trial. They believe that they are seeing an out of control cancer start to come under control, and want to see how good it can get. Having slightly fewer HER2-positive cells is probably the reason that the treatment needs more time to work, this makes sense because she is taking a drug/poison that is targeted specifically to the HER2-expressing cells. They want to obliterate those cells, and the drug she is taking is very good at doing that. As the therapy continues, watch her closely to see if you can detect any improvement in her daily health? How do the side effects of this treatment compare to those she has had previously?
HIgh mutational load of the cancer suggests she might benefit from added immunotherapy- but because the field isn't there yet, you could add a good probiotic to stimulate overall immunity (immune cells have to travel through the gut and interact with good bacteria to be active)
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Hello folks,
Well I got a second opinion from a new RO and he confirmed the progression in my right hip, back and buttock. However he did not agree with needing screws in my hip! So I have started my 15 rounds of radiation. I hope everyone is doing well and enjoying the summer.
Prayers for everyone.
Ronnie
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Lindalou, I can't wait to hear more about that research study. I can't help but get excited when I hear of research involving MBC, particularly when it targets exceptional responders. I think there could be many promising leads there that could begin to solve some of the mysteries of this disease. About that hug you received - I know I would have had tears running down my cheeks. You never know when a wonderful gift like that will come around.
Here is a virtual hug from me to each and every one of you. (((BIG HUG)))
Lynne
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Ronnie, rads will help immensely. They don't work right away tho. Give it time.
In April, I was so bad that I couldn't stand for more than 90 secs because of advancing mets in spine, hip, and right buttock. After rads it's much better 😊.
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<Z> I have worked for Palliative Care for the last 11 years in Lexington KY. They are a nationally recognized program. All MD's are trained in symptom management. Most MO are familiar with their services. If not I would be glad to research and find aPalliative Care service in their area. I currently am not actively working but speak with them often.
Wanda
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Ok. I'm in total shock. My scan was actually good. First time my TMs were wrong! But I'm still going into the study. I can always go back to Halaven. My veins really need a rest. And this study is specifically for my mutation. Plus I can go to Israel in August and in December to Paris for my grandsons birth without missing a chemo treatment.
I think this new baby is already bringing me luck!!!!
Bab
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