Bone Mets Thread
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Posted on the Ibrance thread as well but wanted all to know that after 14 cycles of Ibrance/Femara/Xgeva, my pet /ct scan on Friday shows no abnormal uptake and all bony lesions are healed/inactive!
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Lynn- this is wonderful news. I'm thrilled for you.
Big hugs Carol
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Lynn that's great gives me hope because I'm pretty much on the same trial. Whoop woop for you!
My dear Chelle remember you will get through this scanxiety you have us all in your back pocket and we are cheering
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Chelle - so nice to have an update from you. Yes, all in your back pocket!
Lynwood - congrats on your awesome news!
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Deb, WOOHOO for the great scan results. That is fantastic news. I am doing the happy dance for you.
Daughter, I am glad that you and your mother enjoyed your time together on Friday. The roads in Boston are crazy. Many of them were old cow paths, so they seem all jumbled up to me. I hope that your mom can start the trial soon. If you have time, please keep us updated on her biopsy and treatment plan.
DaughterLove's mom, if you are lurking, Hi! We are all pulling for you.
Lynne
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hi all!
Just heading back home from trial meeting. I signed all the paperwork but won't find out for a few days if I qualify for sure. There are only 10 patient sign ups in BC, so I had to decide right then. It means tons of travel to Vancouver even for blood work (talk about a waste of health care dollars). I'll try to get caught up on the thread tomorrow, so tired right now. Thanks for all the support. Cheers, de
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Hugs Dee -
Amy
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Dee, I hope you have time to rest and relax when you return home. Don't worry about catching up.
More hugs
Lynne
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Sending hugs, Dee
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It's been a rough night. Yesterday we got back the Pet/CT and Brain Mri for Dani. She has had Mets to the bones but yesterday the results came back, according to this Radiologist there is one spot in the liver 1.5cm, also the mesenteric thingy that has been growing on the left side of the abdomen, is getting bigger every time we do the scans. Some lesions on the skull got a few mms bigger. And the whole skeleton is still acting up, but not really getting bigger just not really smaller. So they call that part stable, so he thinks some of the stuff she is taking is working. Hmmm hard to think.
Ladies, I will be speaking to doc in the morning, If you see this, what's your opinion on "one small lesion", does it make a difference if it's small, or once it invaded the liver it's a different "monster". Doc told me last nt, oh, it's so small, maybe they will just radiate it. But should a biopsy be done? I really don't know how I am going to tell her, she deals with what she has to, but she was so hopeful. She does not want the details. In her everyday life she is a force to reckon with, but this is just too hard (that's where I come in, she relies on me, looking out for her, doing research and getting her to a good place).
The last PET/CT was done only 8 wks ago, so it was not there before?
The lesions on the skull, were supposedly stable after some Gammaknife, but now it started growing again. Yes, not by much, but growing. He is considering Proton therapy for this. (to some of them)
She is now on Ibrance/Letrozole, Tykerb/Herceptin. ER+PR+(less than 1%), and HER2+ (FISH +++) Her status of HER2 changed from the original HER2- to HER2+ on biopsy a year ago. Could it have changed again??
Maybe he is thinking of adding Immunotherapy to it.
She has been on everything already, besides some very new ones. WHAT is going on?? She will be devastated, I really don't know how to tell her.
So much has happened in our lives and I see from just a bit in yours. I was really trying to get as much info as possible on the new tx she is on, it's been a race for knowledge. I am substituting in a Kindergarten, my time very limited. When I get home in the late PM, i can't think. I really think all this has affected my brain, seriously. I cannot remember the simplest things. Also dealing, with close checkups for other daughter with "suspicious" stuff, (which we found since she started going for baseline, INSANE). I really want to take some time off to go thru all the threads, and be in touch and learn. I must. Maybe in the weekend. 15 pages to read only in this thread, and I want to.
Enormous hugs to all. I miss you.
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Momall- i am going to start out with mentioning the word stress. You are under stress attack and if you continue with all this burden your immune system has to be taking a hit. Dani needs you and you cannot control this situation. IMO, and here we go again ( I know you love me) is Dani needs to get to Dana Farber and then you will have some clear cut answers. I don't care how small a lesion is if it's there it's not being stopped. It's invading the soft tissue. I would not wait another second to take Dani and the latest scans with you to Boston. Always in my prayers. Carol0
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Hi Momall
I had thoracic and infra mammary mets, then bone mets and then liver mets. In my liver I have 3 spots- all small. These have not effected me in any way. I still work FT. When I first found out I had liver mets I was really upset. I was so very discouraged. First I was on Ibrance/Letrozole which kept me at what they called stable but yet my mets increased (though only a little) I think drs have a different definition of stable than I do. Then I was on a trial for 2 months and my mets really increased so then I was put on Xeloda which has decreased my mets significantly. I know you're upset but wait to see what Dani's MO offers in the way of treatment. There are so many options out there and hopefully one will bring Dani to NED. My thoughts and prayers are with you.
Babs
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Babs- glad this is working for you. How do you compare the SE from Ibrance vs Xeloda? Can you feel a difference in your thoratic spine? I always ache there and my scans say they are healing very slowly. I never had rads there.
Thanks, Carol
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Dear Momallthetime, sending love and support. Stay strong.
xo,
Valerie
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Aww guys, you make me tear up. Lovely lovely people. I call you "my people".
Carol, Carol I AM definitely thinking about it. I need to get some facts first. When I got the news over the phone about the new lesions, I honestly felt a physical thing, my hands were heavy, I lay down. I will be ok. I also have to watch out for my other 2 daughters at home, they are just too close to the action. One of them, having to be checked closely for "suspicious" stuff on Mamos. This thing is constant. BUT I must say, we still joke and laugh, and we don't go around moping. BUT, it's gonna be hard on my SIL i know, and I have to think how to tell her.!
Hey Kendra sweetie, NICE to see YOU!!!
Babs so I just reread the report and it says 2 lesions, it's not ONE. Onco, on the phone yesterday, tried to minimize it. That's why I need to know if it's not just another lesion, but bigger than that.
I am not looking for drama, we have plenty of that
but, he is thinking in adding stuff etc... and I need to talk to him about the biopsy. I know he will say is BC, the truth I think so too. I mean what else? It's not liver cancer on it's own, that would be weird no?0 -
Momall- I wonder too if the BC in different areas have different receptors. I think Christine is the perfect example of them watching her and she was on Ibrance and Let for quite awhile while they watched her liver. I don't want to speak for her, but she did have the liver biopsy and that biopsy came back tripe neg and she went right to xeloda. I believe her BC was ER/PR positive so that is why she stayed stable for as long as she did regarding bones etc. Again, I hate to speak for her, but maybe she will read here soon.
I am always praying for you and your family and certainly am here always to lend an ear with positive thoughts!
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my thoughts are with you and dani momallthetime. Please take care of yourself. Meditate, eat well and rest if you can't sleep. We are with you.
Mary
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I see what you are saying. Just spoke briefly! to Onco. He does not wanna do a biopsy right away, he wants to play it more safe he says and try with more of some type of tx. I am not sure how I feel about it. He is going to be discussing the results with a Radiologist Oncologist and see if Radiation is even something to consider or just keep it with txs. Meanwhile I am still "thinking".
Lynnwood just started going backwards, so happy for you!! it gives everyone hope.
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Momallthetime...I'm new here but have been reading recent posts-I echo others thoughts...please take care of yourself and take one day at a tim
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MomATT, I don't have any advice for you, but wanted you to know that I think of you often & am here for you. hugs, dee
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Momall, I'm sorry to hear about the new spot(s) in Dani's liver. If you can get Dani to agree to it, maybe now is the time for a second opinion, just to reassure yourselves that your MO is on the right track? I will say one thing -- I sure wish I had a mom like you! You are really an amazing woman.
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momatt, Carol took the words right out of my head about the stress you are and continue to put yourself under -- although God only knows how we would handle it if it was our young adult child, so believe me, I'm not being critical. But my first thought as well was that I wish you had an onc that both you and Dani totally trusted, could communicate with, and for whom you were not always trying to second guess or fill in additional information. Oncs that deal only or primarily with bc, including being involved in current research, provide that to us, because they live bc 24/7, so we don't have to. I realize Dani is young, busy with her family, and wants your help. But I also feel, as Carol or someone else already said, that you are trying to control something that should be in the hands of an onc by whom you both feel supported and can communicate with better than it comes across that you have now. I like your current onc's multi-drug approach. But there still seems to be a sizeable gap in what you and Dani are getting from him in the way of communication and support.
As far as the 1 liver lesion, at this point you don't even know for sure if it's a bc lesion or hopefully just one of those odd things that shows up once and is either never seen again or turns out to be something else. If it does turn out to be a liver lesion (and my personal, non-medical opinion is to agree w/your onc re. watching and waiting just a bit rather than biopsying immediately, but this would be a great reason for a second opinion), it can probably be zapped or treated directly. Maybe refer to Bestbird's compendium for tx options to ask about in the future if you need to. But many women do extremely well with liver lesions for several years. Ann Silberman (Breast Cancer, But Doctor I Hate Pink blog) comes to mind, as do others here. And who knows what tx will be available in 2 years or 4 years, which is just the way I tend think longer term. But you absolutely MUST MUST MUST have an onc you trust who can take some of this pressure off of you!!! Interview 10 more if you have to, starting with DF if Carol can help you get in there for an opinion. And yes, although I'm not 100% sure, I'm under the impression that it's possible to have both Her2- and Her2+ bc going on in different areas as the same time. Not absolutely sure, but I believe it can happen as bc cells mutate to survive.
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Momallthetime, livers are odd things that frequently have a spot or two. When I was diagnosed, they said there was a spot on my liver, but they didn't think it was cancer because liver mets usually show up in multiples. Now that spot hasn't changed at all in two years. So"me reports said there was a second spot that shrunk a bit, but my latest reports don't mention a second one at all.
The point is that livers are tricky to diagnose, and I'd want a second opinion or at least a biopsy before undergoing any treatment specific to liver mets.
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Dee just started to read the posts, so so sorry for your progression. Interestingly enough Dani mention a few things were off lately in the way she feels stuff, but we were really optimistic. This was a blow.
Deanna dear, I truly hear what you are saying. I am inching that way. It turns out it's 2 lesions at least, I reread the report(I don't know how I SAW one). Oh my gosh, you always send these good links, I just went quickly to her Youtube video, I saw her before, but cannot remember where. Quite a lady, I will read up. Thx so much. And I am still waiting on Onco's take on the growing one on the frontal lobe in the skull. She has too many lesions there to count. I will get to work on Bestbird's info, she had sent it to me.
Milaandra it makes sense what you say.
Lovelife you are too kind. You just do it, you know. She is so selfless. If she only hears someone needs help, she will be the first one to sign up for preparing meals for a homebound person, or car pool a kid, she is just like that.
3-11 I know you are there, thank you.
At this moment, I am contemplating what and how do I tell her and sil. Him, i believe I will call on his way home from work, I want him to trust me, so far I only said that docs still wanna comb through it. But D, I don't know, she was making plans for the summer with the kids, I just can't bring myself to tell her. I'd prefer to hear what Onco decides first, I think. Maybe nothing about the liver, (if no radiation) just the other thingy on the head, which she knows it's there...
Thank you. For memory, does anyone have an idea, what's good to take?? I know it's the stress, I do try to get a break, the truth is, that is the reality now, but I am shocked at the memory issue I am having.
.
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The Spirit is very effective at lifting the overwhelming and totally normal emotions a scan like that provokes. Is there a prayer circle that you can ask for help? Is there someone with a very strong connection to the spirit in your life? We're all praying for you but that immediate presence of someone you choose will make short work of this. Ask the spirit to take away the fear and return to you all your faculties because you and Dani need them. Right now.Drugs aren't super useful when you are having a totally normal response to something.
>Z<
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Momallthetime, I can almost feel your stress through your posts. I am worried for you. I don't have any magic words or good advise to make this nightmare go away, just know that we are here for you.
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Lovesmaltese- I am lucky, I've never had ANY symptoms from any of my mets. On Ibrance/Letrozole I was very tired- same with X. X has brought me bad HFS, chalazions, eye gunk & constant runny nose. I find the side effects from X tougher than those from Ibrance.
Babs
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Hello all you wonderful women. I am sorry it is so late in the day. But perhaps a little good news is in order before bed. I had my pet scan yesterday and mo visit today. All of my cancer is inactive and I am stable!
My thought and prayers are with you all.
Chelle
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I had to post agin. I just read the last couple of pages. And now feel as if I have been totally insensitive.
Mom, your an amazing woman. I'm praying hard for Dani! I am also praying that you have a very restful night and wake up knowing exactly the right thing to do and say. Carol and Deanna have all of the wisdom. I think we all feel deeply for you. Most of us are mothers and can only imagine what you must be feeling. Too difficult to put into words. Just know that I really love you and all that you do
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Hi ladies. It's been a little while since I posted, but I've been trying to catch up on all of the pages I missed. Some of you have had some great news lately and that makes me so happy. It also gives me hope. I just had my first set of scans (CT and Bone scan) since I started the Ibrance/letrozole combo. I just completed my third cycle and am on my off week, day 2. I read my results last night online and was feeling positive about some of the things I read. I no longer have a 5mm lesion in my left lung, the pain I felt when all of this started was actually 3 benign fractures of the 7th, 8th and 9th right ribs! I can't believe the previous scans missed that, but I'm happy the thoracic sclerotic lesions aren't compressing a nerve causing the pain as originally speculated by the first radiologist. My femur that was I did radiation on in late April is now showing sclerotic activity (that's healing, right?) Well, I did develop new lesions on my anterior left 6th rib, both iliac bones and upper sacrum. The thoracic and lumbar lesions are brighter on the bone scan, showing more progression in those areas. The impression reads: "there is some interval deterioration. All of the pre-existing lesions remain positive, but there is now a third level clustered in the mid thoracic spine and some new lesions in the sacrum and adjacent SI joint regions." The CT impression states: "Progression of predominantly sclerotic lesions of the throracolumbar spine, pelvis and left hip compared to previous studies. There are healing fractures involving the right ribs. There are stable appearing changes elsewhere compared to prior studies." I'm not sure what the interval deterioration means, or third level clustered.
My MO called me this evening, and was acting as if I would go off the deep end from reading the results. I told him I'd rather focus on the positive items, and to echo what he told me in the beginning of May, the Ibrance takes some time to fully work. I didn't expect it to stop the cancer completely, but I wasn't thrilled about additional lesions either. I see him officially on Monday, and he wants to discuss adding Herceptin to my drug combination. I was originally Her2 negative, but the recent bone biopsy showed my Her2 was ++, which is no longer really negative, but not positive either. We agreed another bone biopsy might give us the same results as before because of the decalcification process they use in histology. No guarantee the FISH will be able to be completed.
The last 3 months since diagnosis have been an emotional roller coaster. I don't have any pain, only occasional aches in my lower back. I'm active with my daughter and hubby, volunteering at every school function, cleaning, gardening, softball team mom, basically living just as I did before diagnosis. I don't want to give up on the Ibrance/letrozole combination yet, and am rather happy about the possibility of adding Herceptin, because I feel the mets are more Her2 + and might respond.
I just realized how jumbled this post appears. I guess it corresponds to how my brain feels at this time. Sorry to babble. If anyone reads this and can offer some clarity to the impressions, or would like to offer thoughts or suggestions, I would greatly appreciate it.
As always, I keep each of you in my prayers and positive thoughts.
Debie
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