Bone Mets Thread
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Hi ladies! I don't know if I have posted on this thread yet but do read it often. I was just rediagnosed after 2 short years and have begun treatment again. I have a small(not sure exact size) spot on my C7 vertebrae, 1cm spot on my liver and 2cm tumors on my pituitary gland. I had Cyberknife to the pituitary tumor and pray that it zapped it away!! Will have a repeat MRI the end of August! I started Taxotere, Herceptin and Perjeta on June 9th. I have heard of Radical Remission but haven't read it, I am going to get it and join that thread! I have already altered my diet but anxious to read what is suggested in this book:)
God Bless to all you fabulous woman,
Kathy
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Stilts, absolutely get a second opinion at the Mayo. Not all oncs think alike, and going where they truly specialize in mbc might yield other tx options. You can always take that information back to your local onc, but getting input on your case from docs who are truly on the leading edge of research is always beneficial, even if it ends up supporting your current onc's choice, you will always get some additional insight, as well as end up feeling more empowered.
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LovesMaltese could you possibly post the link to the Ibrance thread where the podcast is? I searched for it but I got 5,000 results for Ibrance
Thank you
Aurora
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Thanks Dee for posting it. It was chuck full of great information!
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Stilts, I went to Mayo for my second opinion and the MO I met recommended doing the exact same tx as my MO so that reassured me. She is no longer practicing there and I do not know where she relocated. However, I'm sure there are a number of doctors who will consult with you. Your current MO can 'push' all of your documents and scans to them in an instant for review. I was very pleased with Mayo.
Thanks for the podcast Dee.
Kathy, You will find some wonderful help and support here. There are those here who are triple positive who I'm sure will answer some of your questions. Welcome.
Letmywife...how are you doing? Your wife?
Anybody hear from Terre?
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Lindalou, I exchanged emails with Terre a week or so ago, she told me that she is really busy with work & the house & of course the Kitten Inn. I think that BCO has just lost it's place in a busy life being well lived which I think is a good thing!
Kathy & Stilts, I don't have any advice to offer, but there is lots of well informed women & "letmywifelive" of course!
I've spent the last two days moving furniture in our small house. Why would I be doing that you may ask? Well the law of Murphy says that if you decide to buy a new lamp every single piece of furniture in your house will need to be moved to figure out where it should go! LOL! My back is not going to be happy.... take care all, cheers, dee
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Hi Everyone,
Nice to see everyone still remembers me - as I have been silent for a while but have been watching this forum regularly. My wife is doing well symptom-wise. She has very minimal pain (1 in a scale of 1 to 10) and is fully mobile. Not taking any pain medications. Her liver numbers are perfect. Tumor markers (CA27.29) have gone down from 925 (in March) to 290 (a week back). She has just completed her 3rd round of Ibrance. However the first two times it was 2 weeks on and 2 weeks off due to low ANC. Last time she could complete full 3 weeks @ 100mg dosage.
She just did her CT scan and MRI last Friday. We are stressed out at this point about what the results will be as we meet her onc this coming week. Please pray for her.
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Thanks for the advice from all of you...will plan to call Mayo this coming week to set up an appointment..I believe they have a few clinical trials I may qualify for so we'll see...I think I will just feel better mentally about the treatment options
Letmywife...will pray for good news for you this week!
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Welcome Stilts - I am very curious what you get as a second opinion from Mayo. Bone mets are tricky to biopsy and if you are triple negative there are some new options in the pipeline. It's not a straight forward treatment decisions at all. Please let us know what they say as we are all interested in the emerging area.
Letmywifelive. So glad your wife is well. Praying for an awesome scan. Stable would be awesome as ibrance takes its time to work.
>Z<
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Kathy, just wanted to say, welcome! I'm so sorry you have reason to be here, but I'm glad you've found us! I'm curious where you are in AZ. I'm also in the heat belt, near Palm Desert.
LMWL, I am also praying for your wife's scans! I hope you get only great news! Her drop in TMs is awesome!
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dlb823, Hi! I live in Glendale, Northwest part of the Valley!
Kathy
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Onc gave a phone feedback today about my wife's scans (CT and MRI). Seems to be stable disease with some lesions now appear sclerotic (indicates healing). No new lesions and none in organs. We are supposed to meet her Onc at Stanford on Thursday. Then we go for a second review in UCSF next week. Will let you know what we hear but we are little relieved for the moment.
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LMWL, Great stable news! Just what we all wanted to hear. Good luck as you move forward with second review.
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LMWL. Great news!!!! Happy dance time!!
Babs
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LMWL- Thanks for sharing the good news- Good luck at your second opinion and please share with us any new thoughts or ideas.
Carol
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Great news on your wife's scans, LMWL! Interesting that you're going to both Stanford and UCSF -- two of the best of the best. Like Carol, I'll be very interested in what they have to say. Has your wife ever had a bone scan? Sounds like it would also yield great news at this point, especially if she's had one in the past to compare.
Faslodex and Xgeva are on my agenda for this morning, along with labs. Last time my creatinine was a bit higher than usual. Hoping it was just an anomaly. We'll see.
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LMWL - Excellent news. But don't stop there ... get that second review ... It's great that you have access to two excellent centers. Let us know what they say.
>Z<
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Thanks all for the good wishes, prayers and looking over my thread in this forum.
dlb823 - Yes we are fortunate to be close to two great cancer centers when we need them, though not a great fact that we need them in the first place. Also, I have a pending question for the Onc as to why no bone scan was done. My guess is that a combination of CT and MRI negates the need for a bone scan. However, I will ask anyways.
I will share further details after we visit UCSF next week.
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Good morning all!
LMWL & Deanna, I would have thought a CT & MRI would negate the need for a bone scan? I have bone scans fairly regularly because they are less expensive, but if they need to have a closer/better look at something then I get a CT or MRI. But it is always good to ask anyway, because our medical systems are so different. Great news BTW!
Good luck today Deanna.
So I think I've had all my testing completed for the trial. Now it's just the waiting..... heading back to Vancouver on the 11th.
Anyone heard from Patty? Our postal system is going out on strike so sending a card won't get there. Does anyone know if she would mind if I sent her a text or even email? I've sent PM's but didn't get an answer.
Have a good week everyone!! cheers, dee
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I also been thinking of Patty.
Deanna good luck on your blood work.
As for bone scan, I only get bone scans and ct scans but I'm sure there are other reasons for doing things differently. Every case is so different as to what type of cancer presents maybe differently in areas of our spine vs ribsfemur etc.
Carol
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Hi Everyone,
Great news LMWL! Stable is music to the ears :-)
Patty just posted on her thread... saw it just before stopping by the Bone Mets topic.
Sending good thoughts to the group!
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Kathryn. Thanks for the update on Patty
Babs
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hello. Popping in to check on my fellow metsters and bco sistas. Glad to see most are doing well. Didn't see any major progressions on y'all so wonderful.
Things are still very hard here physically and mentally but pushing through. Last pet showed increased uptake in several tumors but no new spots. Since 3rd pet like this and increased pain mo and I decided to say goodbye to ibrance/falsodex combo. Will be moving on to oral xeloda . Nervous that it is a chemo. Have read xeloda thread and glad to see many familiar names.
Hugs all around.
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Hi Patty, nice of you to check in, sorry for the bad PET scan, will be praying that the Xeloda pushes those darn c cells into oblivion and that whatever other issues you are dealing with can be resolved in the most helpful manner.
Aurora
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Patty, So good to see you!! Hope Xeloda gives you fewer SE's than Ibrance and Faslodex and that you can get some quality time with your family. Know that we are thinking of you and always wishing you the best.
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hi lindalou and aurora. Have a great day ladies
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Good morning all,
LMWL - excellent news on stability! Waiting with you to hear more on second opinion.
Patty - So happy to hear from you! Wishing you the best with Xeloda. I remember Goldengirls saying her Mom had barely no SEs on Xeloda for a long time. It's a very individual thing.
Saw my MO yesterday and she's very confident I will be able to get on the Ibrance clinical trial (same as Dee). She had been on the lookout for Ibrance as second line tx for me and this trial popped up. With latest fractures and new spinal lesions that showed up last year, she feels it's time to change tx. She was comfortable keeping me on Femara despite the slight progression I had and some regression at the same time, but now time to move on.
Hugs all around
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Hi ladies, I had a wonderful trip with my sister, she left yesterday. I am feeling much better on my week off Xeloda, I start again tomorrow. I am on 2 pills am, 2 pills pm. Guess who I saw on the Xeloda thread? Patty!
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good morning all
I have been reading daily but not posting much. Very busy with my mother's funeral service last month and many visits with family. The service was just what my mother would want.
My recent pet (6/21) said no measurable target lesions by recist criteria.Which I think is a positive indicator. But showed two new spots and two old spots with higher suv values. I believe it is still a low tumour volume. But am switching MOs because my MO is specializing in blood cancers and wants me to see a breast cancer specialist. I will miss him, but I am staying at the same cancer center. So next appointment 7/20 to meet new MO. I did meet with RO but my pain is not near cancer spots at this time so no likely benefit from radiation.
I am happy to hear good news from others. Missing some old names but good to see updates from Christine, Patty, Linda, Lindalou,dbl, dee, auroaya, lmwl and others.
Peace
Mary
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