Bone Mets Thread
Comments
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Amy- the pool sounds like a lot of work-but so worth it. I loved the one I had.
Lynne-it seems at times that too much is heaped upon us! Try to hang tough!!!!
Kennya-sorry you and your wife find yourselves here. The women on this board are simply amazing! You'll find them a great source of information and support. Enjoy your family time in Maine.
Babs
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Dee - I am way behind in congratulating you on the acceptance to the trial! And so glad that you got to meet Wendy!!! I am so hoping to get to meet one of you amazing women someday.
Deanna - loved the picture.... and I just missed you. I was in California all last week house hunting with my husband in the Aptos/Captitola area, and we took my mom north for a few days ... Mendecino is one of her favorite places and my husband had never been there. And yes.... don't your bones feel so much better in the heat? I too had pain in my lower back while we were out there - even in central California with the temp's in the 60's. I think it's that fog... anyway, back in Denver with 90 degrees and I feel a lot better. (does not bode well for a relocation to the California Coast, does it?)
Hello and hugs to everyone else!
XO
Andrea
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Andi,
Good luck with the house hunt. I'm right up the road in San Jose, which is warmer and drier than the coast but just a short drive away. My younger dd an I have a de-stress ritual. Drive to Gayle's Bakery and Deli (right off Hwy 1) to take out a delicious picnic lunch, then drive to Capitola Beach and stare at the ocean. Works every time!
Wishing all a peaceful weekend
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Ken- I am in Newburypory as I write this. Sounds like we are very close. My daughters live here and I go to Dana Farber for my care. I cannot say enough on how much they have helped me. There is a MO there that specializes in young women with stage 4. She is wonderful. If you want to google her name is Dr Ann Partridge. Actually amazing she's amazing and took my case on for second opinion. I see someone different now but she is under Dr P. If you have any questions you can in box me. You can get in for second opinion fast. I have the info who to contact.
Hugs Carol
Edited to say the thread is moving fast but I am reading. Will respond after weekend. Grandkids got me so busy.
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Lovesmaltese,
I grew up in Newburyport and that is where my wife is doing her treatment. (Anna Jaques) We currently live with her parents just down the road in Groveland. When she was diagnosed we were living in Amesbury.
Depending on what we decide to do with this new diagnosis we could move on to another hospital for treatment. We have nothing but great things to say about the doctors and nurses at the Newburyport Cancer Center especialy Dr. Eneman, who had to do the extremely tough job of telling us the new diagnosis.
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Ken- my gosh we're close. I would definitely get a second opinion at Dana Farber. They have a trial for TN that I just was reading about. What treatment is she doing now? You can get second opinion even though you are in treatment. Dana is like 4th in the US for woman breast cancer.
Hugs to you and your wife,
Carol0 -
Until this diagnosis she only had 9 radiation treatments left for her stage 3 diagnosis.
We're going to Beth Israel to go over options, trials etc... Her appointment is with Dr. Come who has overseen all of her treatment from the very beginning from Boston but Dr. Tung at Beth Israel is going to go over all of her trial options, including referrals to trials at other hospitals.
In other news, in our conversation with her MO at Anna Jaques, he is trying to get Anna Jaques set up to do some clinical trials in Newburyport he thinks sometime in the next few years that might become a realit
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50girl. 4 false alarms. How scary but thankful they were false. Keep optimism alive
Aurora. Love the scenery on the river of denial instead of under a rock
Amyq. I also feel like driving miss Daisy. Just so much easier to ride then drive. Been trying to get ds1 to study drivers manual so he can get permit. Not sure why he has to be pushed. Heck I wanted my permit and license as soon as I could get them.
Hugs to all
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Kennya - I was just responding to LoveMaltese in another thread about being in Newburyport. I live in North Andover, Ma. We keep our boat in Amesbury and my in-laws live in Newburyport (they are 87 and 83 God bless them). Small world! I go to Mass General in Boston for my treatment but I got my second opinion at Dana Farber (they agreed with MGH treatment plan). Beth Israel is great too. You certainly have terrific cancer center options nearby. I am not TN so can't really offer any insight there but the ladies on this forum are wonderful and you are sure to get a tremendous support from them. I'm sure you'll hear from some who are TN.
Cathy
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Kennya, adding my welcome to you. I'm so sorry you have reason to be here, but I'm glad you've found us. And you're a brave man to venture into a group of estrogen-deprived women! As far as second opinions go, here's a list of the specifically NCI-Designated Cancer Centers. What makes these superior are (1) They see the most cancer, so logically see the most of any subtype, such as younger women with TNBC. (2) They are the most leading edge when it comes to what's going on because they're the same docs actually doing the research. While I also see a local onc for monthly follow up, I can point to at least 4 times when UCLA's tx recommendations were months ahead of what my and most local oncs and/or plastic surgeons were doing -- things that are now the standard of care, but were not when I was put on them, or in the case my PS, doing Diep way before it was common. I consider my UCLA onc my lead onc for this reason. (3) Most importantly -- the docs are all brilliant. UCLA, for example, has as many as 10,000 applicants for any one position. They will leave no stone unturned in figuring out the best course of tx. Can local oncs recommend the same tx? Absolutely. In some cases, you can find excellent local docs who have trained in these bigger institutions, so have the same mindset and follow all the same diagnostic protocols. But IMO, without a second opinion from an NCI-Designated Cancer Center, you are taking a risk, and if you want to see how quickly things can go off track even with experienced local docs, read my bio page. And the problem is, until you've been dealing with bc/mbc for awhile and some of these things happen to you, you don't have enough expertise to spot the difference. Enough said, except that sadly, I learned this the hard way, which is why I am so passionate about it. Here's that list: http://www.cancer.gov/research/nci-role/cancer-cen...
Andi, I'm sorry I missed you too, but ours was a very last minute getaway. Plus, Moonstone Beach (where we were) isn't as far north as it sounds like you were. And while I'm sorry to know you also experienced more discomfort in the cold, wet weather, hearing that greatly eased my mind! I'm also feeling much better today after being back in the dry heat for 2 days!
Amy, sorry about the extreme fatigue, but I had to smile at the Driving Miss Daisy analogy, which is the way I feel when we go into UCLA -- an approx. 3 hr. drive depending on traffic, that I pretty much depend on my hubby to do with me, mostly because I don't feel mentally up to the challenge of LA traffic. But as far as your fatigue, do you think it's just the long trip you did catching up with you... or tx-related... or possibly thyroid... or ?????
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Kenny so sorry you are part of this wonderful bunch. We will try to help you. There is a lot of good treatments available, and you seem to be in a great Center.Hugs to you and your family. Aww that baby!
Lynne honestly, it's too much. Aww sweetie, I will keep it all crossed, fingers, toes the works. Millions of kisses. YOU DESERVE A BREAK!
Amy not a bad project at all. WOW, how nice!
I have a question: I was reviewing Pathology reports and early scans in preparation for doctor's visit. In the Pathology Summary it says Invasive Ductal Carcinoma, then below it says Solid type with Lobular Involvement. I never realized that, how does it change anything? Was it two types, Onco and Surgeon kept telling us it's aggressive but never said something about this in particular.
TIA and hugs to everyone
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MomAtt- great question to be given to a top notch pathologist. MO's are only as good as the pathologist they rely on.
Hugs Carol
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MomATT, my first biopsy in 2008 used very similar language. As I recall, it was "invasive ductal carcinoma with lobular features." Then, when I had my surgery, the pathology described it as two lesions (one ductal and one lobular) growing side-by-side. In Dani's case, I'm guessing lobular involvement means the bc has infiltrated the lobes, which would make it lobular (I think).
Anyway, several months ago, when I realized that some women here on BCO put a lot of emphasis on the fact that their mbc is lobular, I asked my UCLA onc if it made a difference in my case which one we are dealing with now. Her response was something like, if would only be helpful for her because lobular tends to metastasize to odder places, so if I was experiencing pain, it might cause her to suspect mets to that area if she knew my mets was lobular. Otherwise, it made no difference in terms of tx. But that said, it does seem like quite a few women who know they are dealing with lobular do seem to come up more often as tx resistant. Our dear Hope (Romansma) comes to mind. So, it's certainly something anyone treating Dani should be made aware of and asked the importance of in her specific case, and hopefully it will be helpful.
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my first biopsy in 2002 also had similar language. I was cleaning out closet and found these old med papers when's sis was here. I kept them although in this day of computers not sure why I need a hard copy from 14 years ago
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Yeah Patty, it's still good I think to keep paper. We have e/t on the net. My SIL actually got a site just for her whole HX. But I print out every single BT and scan. Are you doing better on Xeloda Patty? It's Def a choice for Dani, tomorrow is D day literally, so anxious!! I went there to drop off the slides from all biopsies, thank goodness I always requested them back, the atmosphere seems nice, the secretary is competent and nice, NOW I hope we click with the doc!
Deanna dear thanks so much for the input. I do think they were always concern on the aggressiveness, the whole Pathology shows it. Her KI67 was 30%, and it said that the DICS has extensive lympho vascular invasion. What does THAT mean?? I wonder now if that's why the breast surgeon always had a sad face when I saw him, he always said it's very serious. So was METS right away? But never told us his real concern. I think they should have watched her closer. But the truth is, of course it could not have been avoided. But when the mets came and I suggested biopsy both him and Onco did not see necessary to check, only 2 yrs later bcs of constant progression and ONLY then it showed change in HER2 status. So of course I always wonder WHEN did it change?? And I know he liked her so much and cared, WHY did he hesitate in doing a biopsy.And wait see what i saw on the first scans done, really weird.
AND… on the first PET around time of first DX, and on the 2nd one a month later, I reread and saw things as: Could someone also explain if it says hypermetabolic activity in the superior mediastinum, small lymph node and it measures 7.2x6.6 mm with standard uptake OR hypermetabolic foci in the right chest ,hypermetabolic activity in the bone marrow. Hypermetabolic activity in the T12 vertebral body. And so on and then it says suspicious for bony metastasis. And in the MRI it says there is small lesion in the T12…so she WAS metastatic from the get go? I am confused? This findings were just a few days after lumpectomy.So what's your opinion?
I think it's important to know this, no? Deanna I also see that women with Lobular involvement are more concerned here in the thread, that's what got me thinking deeper into it. And they did not even jump when she told them WHEN she did have pain in the scapula, WE checked it out further, THEN they panicked.
Preparing for tomorrow, very excited AND very anxious.
Another day....today I gotta do a lot of research to be prepared!
Guys, it does REINFORCE that WE have to look at all the scans, BT's, anything and everything and question, not just blindly listen to the docs. These were good docs in a major Cancer Center in NY. Warm hugs!
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MomAtt- I know I have said this before but when this all happenened to me local onc did a pet and ct scan but When I went to Dana Farber they said we won't be doing pet scans. I was a little upset until I started to compare Notes to those who also went to NCI afflilated centers. Again I brought it up to MO at Dana and answer was they get more accurate information from a bone scan and then compare to the cat scan. So maybe pets are good for baseline ? They do give false positives and can cause unecessary worry and testing. I don't have stage 4 in soft tissue so again each case is different - good luck hope you connect with new onc will be thinking of you as always
Strong squeezy hugs to you
Carol
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Carol right back at ya. We'll see what the protocol is tomorrow. I am having jitters, like before an exam.Docanxiety!
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Hello all,
Once again, it has been a while since my last post. I read often and pray more often.
Lynn, stay strong! These next couple of weeks will be rough. But I do feel that there will be some good news from somewhere!
Patty, it's great to see you posting!
This summer has been a bit difficult. On June 15th I posted that my pet showed still stable on tamoxifen., which is wonderful! On that same day, I started my cycle. Tamoxifen has thickened my endometrial wall to 3.6 cm. which caused very very heavy bleeding. I have become very anemic. I went to a gynecologist and had an ultrasound as well as a uterine biopsy. All results are in and it is benign. However, it is now a month later and I'm bleeding again. I feel so weak and light headed, it's scary! My onco is out of town until August. An on call onco has put me on zoladex as well as the tamoxifen. Zoladex is give subcutaneously in the belly. They numb the area and then insert a capsule with an enormous needle. Kinda yucky!!! However , the zoladex should suppress my ovaries and I should no longer bleed. Has anyone had this combo before? Or any tips on how to bounce back from anemia. I am eating a ton of iron, taking b12 and an iron supplement. I'm open to all suggestions. This summer isn't quite over, I'd like to have my energy back and enjoy it a little.
Love to all of you!!! Chelle.
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Carol - It is so interesting to know that Dana Farber does not do PET scans. I have one doctor that swears by them, another that makes the same arguments that Dana Farber does. I've had both false positives and false negatives on PET scans. Since the insurance doesn't cover more than 2 per year, I've decided to alternate and watch how they compare.
>Z<
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Momallthetime. I'm thinking of you and Dani and hoping you love the new dr and he/she is the right answer for Dani!!! Please keep us posted!!!!
Babs
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This thread moves so fast.... Caryn, love the picture of Miles, although I think that was on another thread. Darling! Very life affirming. I want one! I didn't realize you were in Northern CA.... for some reason I thought you were in Southern. I fly in and out of the San Jose airport when I go.... I'll be there this weekend. Love that airport! And love Capitola Beach. I am thinking we may end up inland just a little, too.... the warmth really does make a difference to me. My husband's new job is with Earthbound Farms in San Juan Bautista (sp?).... so we have some options, although I really do love Aptos.
Hugs to everyone else! XOXO
Andrea
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Momatt,
Sending happy thoughts and prayers you begin a positive journey with Dani tomorrow.
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Andi,
Thank you. Baby Miles and my 4 year old granddaughter (his cousin) are truly the lights of my life. In addition to their moms (and the rest of my family) , I get a new group of first graders every school year. I am inspired by them as well.
I live near downtown San Jose, just 15 minutes from the airport. PM me if you ever have any extra time and want to meet for a coffee or something. San Juan Bautista is a cute town and it's mission (with the San Andreas fault running behind it) gives one a great peek into what CA must have been like during the height of the mission period. Make sure you go to Gayle's the next time you're in Capitola
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Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads.
Appointment went well. Regimen: Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure. Was a bit of an anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.
Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive for the tx. Still have to see Rad Onco this Friday. Rads? Maybe for the bigie lesion on the skull. Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .
She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic). Otherwise she does not think there is much to get to TP53.
Off to Geneticist we went, she will do the BT for more gentics profiling when she comes in for the infusion. Also of course the newer mutations, like PALB2.
Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.
She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.
Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.
Check on you tomorrow! Great night to everyone.
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MomATT - Way to go! It comes across as a solid and thorough diagnosis and treatment plan. And exhausting. It is so much work.
Alpha lipoic acid is one of the complementary therapies. Not FDA proven. It doesn't sound like what this lady does. I like it that this doctor feels she has clinically proven options for Dani, that she is considering biologics and has some clinical trials in mind. I would follow this doctor's process as long as it feels right for Dani. Sounds complicated enough.
>Z<
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zarovka, Stanford never did PET scans for my wife as well. We also go to UCSF now a days for 2nd opinion and Onc there also says that CT + MRI are the way to go with Bone scans if necessary - but no PET.
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Mommat - WOW a lot of info! They certainly are looking at everything. Waiting to hear more and of course, wishing Dani the very best and a little break for you.
I had my first appt with MO and nurse trial coordinator yesterday. My current MO and trial MO do not agree that there was progression. CT and bone scans next week along with further info requested from my local hospital will clarify if I qualify or not for the trial. I would have a choice between Tamox or Fas in combination with Ibrance. Much to my surprise, hormone therapy would not be supplied by the study and the cost of Fas in Canada is borderline outrageous. Nurse thinks it may be supplied and is checking with the hospital pharmacy. She agrees it's absurd to have to pay that amount of money on a clinical trial and would restrict participation. Question: Anyone else had to pay for a commercialized drug in a clinical trial? This issue may be very specific to Quebec, we always have to do things differently. I'm also checking with Health Canada to see if this is standard practice. Copay for Fas by drug Co (AstraZeneca) would be 20%.
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And the wait begins ... Had PET scan this morning to see how Ibrance/faslodex is doing...
Aurora
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For what it's worth, I don't get PET scans either. UCLA uses CT + Bone. My local onc had a request for a PET denied by my insurance during my re-dx process (perhaps an influencing factor with PETs these days?), but UCLA told me not to worry about it -- that CT + bone scan does the job. I've also had MRIs on occasion for specific issues, like when I had the fractures.
MomATT, I have a good feeling about the new onc you found and her suggested regimen for Dani. I'll be curious to know when things settle down a bit and you've gotten some rest how you feel about her. More than anything, I hope she will be someone you can trust enough to take away much of the education and research burden you've felt you had to put on yourself with Dani's previous oncs.
Fingers crossed and prayers for great results, Aurora! Glad the PET's done.
Popping my last Ibrance of my current cycle today. Scans coming up on August 5, which will be exactly a year since I started Faslodex + Ibrance. I'm also in the process of listening to the audio version of Radical Remission. If you are open to holistic approaches, I can highly recommend it after just a few chapters. It's far more well-researched than I had anticipated. In fact, I'm anxious to have my hubby listen to it for his general health. Carol has a thread discussing the book if you're open to holistic practices and interested in knowing more: https://community.breastcancer.org/forum/79/topics...
I also wanted to call your attention to an updated roll call thread that Z started. If you haven't logged onto it yet, here's the link: https://community.breastcancer.org/forum/8/topics/...
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I wanted to give some updates on my wife's situation. She ha her pet scan Thursday which showed a number of hot spots. T8, L5, and a number of spots on her tailbone/pelvis. She had a CT scan which showed nothing. The doctor at Beth Israel in Boston is saying that he still believes the cancer spread to her spine and he doesn't have any other explanation for her pain. But he did say that this opens a small window of hope that it is not cancer that spread to the bone. Next step is an mri which should happen before Friday.
Sorry if I may have posted here prematurely
Ken
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