Bone Mets Thread
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my tumor markers went up 50 pts. I'm on faslodex, zometa and just did two weeks of ibrance, but my counts are so low, they don't know if they can continue. I'm feeling Very discouraged.
Rachel
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Chelle, When will you start looking for a new home and property. It is great that you are following your heart and dreams. Keep us updated as you begin your search. I am excited for you.
Mary, How are you doing? I have been thinking about you.
Patty, I noticed that you posted to another thread. I am glad that you are getting help through a Home Health. I hope you gain back your strength and begin to feel better soon.
Bosco, How are you feeling?
Kathryn, It sounds like your trip was as wonderful as you had hoped it would be. I am glad that your dd enjoyed it wit you. Added your family members to the deed is a great idea. It is such a warm and loving gesture, and I am sure it will be appreciated with the same warm feelings.
Cristina, Are you doing okay? I hope you are taking care of yourself. Did your son enjoy his birthday?
Maria and Decision, I hope that you and your Moms are doing okay. You are both loving, devoted daughters. My heart goes out to both of you.
There have been many bad storms and tornadoes in the US again. I hope you are all safe. The yucky weather is gone here, and just as Valerie predicted, today was a beautiful, sunny day.
I started the ball rolling to transfer my care to the office where my onc will be practicing. It feels good to have that out of the way. I got a call from my urologist today. I have to give another urine specimen because they found blood in my urine during yesterday's visit - no UTI. She is going to have full panel of tests, urine cytology, performed to check for cancer....grrrrr. She thinks it's unlikely but has to rule it out. It could be nothing, could be from bc treatment, who knows. When I had CT scan last year for MBC dx, they found out that only one of my kidneys functions so this is all follow-up to that. Yesterday's appt was just supposed to be routine visit, but I guess that would have been too boring. I am really not at all worried. I actually laughed and thought, oh, of course I need some test. Haha
Hi to everyone. I won't mention everyone's names because I know I would forget to include someone. You are all in my heart and prayers.
Lynne
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just wanted to thank you for the replies to my newbie request. I feel much more prepared to have a productive conversation with my MO tomorrow when he comes by during my chemo infusion.
Also wanted to wish everyone well, especially those feeing discouraged or not well today
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Jennifer, I don't think that I welcomed you. Welcome to the bone mets thread. I am sure that the wonderful people here have been able to help you. Good luck tomorrow. Always remember that the MO is there for you. Ask any and all questions you have. No questions are unimportant if they are questions that you want to ask. I hope you infusion goes well. We will all be there with you in spirit.
Lynne
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Rachel I'm sorry to hear that I'm getting my first shot of Faslodex on the 17 th. So maybe not so great after all. Have I said how much I hate this sneaky ass disease!
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Amy,
I have a tooth that had a previous root canal on prior to breast cancer, this tooth now Hasan abscess. My oncologists has me stopping my comets 2 months prior to any work on tooth and ill wait 2 months after work completed before resuming treatment, he has another pts who did this and had no difficulty with her work on her teeth. Good luck.
Marilyn
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Lynne - aargh...of course there is another test! Praying it is an SE that goes away rather than another adventure!
Jennifer- Sorry you have had to join this club, but I know you will get good info here. I didn't have a bone biopsy to determine her + status. It may have been another scan. Hang in there! You have done well with the infusions so far. We are here for you.
Sending good thoughts to the group... The support available here is the best!
This pix is from one snorkeling place on Cozumel. There is a hot tub under the umbrella
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Kathryn, I am going to imagine that picture as I close my eyes tonight. It is such a beautiful, calming scene. I will have such a great night's sleep.
Lynne
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Lynn and momallthetime, Thanks so much for your kind words. You are both so wise and it really touched me that you remembered all my struggles. Your support is a great help. I do know once I share my thoughts and feelings with my dh he will be supportive. I think I will write out a note of appreciation. My wonderful sister also recomended I write out my troubles each day and let go of them spiritually.
Lynn I do hope your tests turn around and you and your dh get to take a breath or two.
Kathryn Thanks so much for the picture Beautiful.
Patty and Bosco wishing you continued healing.
Thinking of everyone with gratitude for this safe place for support and kindness.
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Kathryn, I was post-menopausal upon DX, but never took HRT. Then there's my 83-year-old mother who is still taking HRT, albeit low dose, yet she has never had a cancer DX. She says she's done everything wrong, and can't figure why I'm the one with cancer.
Jennifer, I also had radiation, but not for pain, to my two small mets on the ilium and T11 found by PET. Even though I had chemo, my MO wanted to be certain the spots were necrotic.
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Bjsmiller, It is amazing to see how few of us with bs have none of the risk factors for the disease, yet so many people with all or many of the risk factors never get bc. I guess most of us do have the biggest risk factor of being female, but there is no way around that one. There is so much more to learn. As it is, if I look back, I see nothing I could have done differently that would have decreased my risk.
Oh well. I am here. I am alive. I am enjoying my life.
Lynne
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Rachel1: I am sure you feel discouraged. What is your MO offering as a next step? Thinking of you.
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Because I am becoming one of those "dog people"...
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Rachel1, I hope things turn around for you. I have never taken Ibrance, but I heard that TMs sometimes increase when you start that treatment and then go bad down. Maybe others who are on Ibrance can confirm that. Is your MO thinking of decreasing the dose of ibrance or discontinuing it altogether? Let us know what decisions are made. Hugs and prayers for you.
Rachel, From one dog person to another, what a cutie. He certainly seems to have adapted well to his new home.
Lynne
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Great photo, Rachel! Not only is he adorable, you have a really good eye and camera!
And Kathryn, what a gorgeous photo of Cozumel! Oh my, I feel relaxed just looking at it! So beautiful!
So Wendy, are you still in the trial or just doing Faslodex or still deciding?
Oh, Mary, it sounds like you have so much on your plate. At least you are aware of at times taking your DH for granted, which many of us do. Can you possibly plan a little weekend getaway? Maybe somewhere within an hour or two of home -- just to change the scene and be able to reconnect with his thoughts and needs? Otherwise, maybe just cook his favorite meal if you're up to it and focus on him for an evening. I'm sure he'll appreciate it. (And you're not alone! I need to take my own advice on this, LOL!)
Lynne, I'm so glad your hubby is improving quickly now. I know at times we just do what we have to do, but I have been in awe of your resilience in the face of his serious health challenges and setbacks. Praying for only continued healing and strength for him and for you!
jen, good luck today! I'll be thinking of you and am sending strong, positive thoughts for a productive appointment with all the time and answers you need. One thing I appreciate about my onc @ UCLA is that she always gives a same day response to an email or message. So even if you forget to ask something or have a followup question, as I often do, hopefully your onc there will be every bit as responsive.
Rachel, I'm sorry about the disappointing jump in your TMs. How long have you been on Faslodex? And how low have your counts been on Ibrance? There's really good info' on the Ibrance 2014 thread, including a chart somewhere about when to withdraw the med vs. lower the dose. I can find it for you if you need it. And if this is possibly your first month on Faslodex (sorry I can't remember), I wouldn't be discouraged yet, as some meds -- especially Ibrance, as Lynne pointed out -- can take awhile to get those TMs headed down. Plus, as you know, something like inflammation can affect them. I've repeated this before, but my UCLA onc once said she wouldn't worry unless my TMs doubled, which has helped me be patient at times and not panic.
DF, so glad your Mom is out of that horrible hospital. She sounds like a very strong woman to have ridden out that situation. I hope she's getting much better care where you have her now. And I hope that you can relax just a bit now too and focus on your own health.
(((Hugs))) and prayers for strength going out to each and everyone here and for our families. Deanna
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Waving hello from Auckland! Hope to catch up a bit this weekend but thought I'd say hi!
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Hi back at you Terre hope you are still enjoying some summer weather at your new digs. Everyday at the gym I hike the hills of New Zealand ( on the little screen on the elliptical machine) I can almost hear the birds. Then I think of you and hope you are well.
Deana yes so the trial basically starts on the 17th that will be my first wack of meds. However before that I will be undergoing a barrage of tests. More scans ct and bone a mug scan ( heart) a whole pile of tests. Tomorrow it starts with blood work and a full physical. My husband said its really sad that you have to join a clinical trial in order to get good health care here. I will even get a hormone panel done to determine if I am even menopausal or not. You would think that would be something they would have done before putting me on tamoxifen for nine months only to find out it wasn't working. I have been taking nothing for four weeks now. I worried my tumour would go nuts and grow again instead it has gotten smaller. I will have numbers tomorrow. If nothing else it will be interesting.
Rachel the dog pic is so cute what a sweet face. He looks very happy☺️
Wendy
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Looking for info from you knowledgeable ladies. I have pain in my lower arm and wrist. My onc says it is probably due to Arimidex. But, I am scared and concerned. I had a large tumor and a small one which had limited responses to chemo. Anyway, I read somewhere on here that seldom do bone mets start in lower legs. How about lower arms? Would appreciate any info
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TripleP, the same is true for arms -- mets rarely appear in lower extremities, such as forearm, or joints. What you're describing sounds far more like arthritis pain from Arimidex.
There's actually a thread for questions like this if you want additional reassurance. https://community.breastcancer.org/forum/8/topics/... In the mean time, if it gets really bad, perhaps your onc would let you try a different A/I, to see if you have less reaction to it -- either a different one entirely, or perhaps another brand, since Anastrazole (the generic version) is made by more than one company. Also sometimes a short break can help.
Good luck, but I wouldn't worry about mets from your description. Deanna
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Hi TripleP, It is not uncommon for Arimidex to cause aches and pains in various parts of your body. It is uncommon to have bone mets in your lower arms. There are many things that can cause pain including arthritis, carpel tunnel, muscle strain, among others. It is human nature to be nervous after you have been diagnosed with bc. If you are truly concerned, you need to have another conversation with your onc so she or he can put your mind at ease.Lynne
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Thank you so much for the information and reassurance. I know it is not carpal tunnel bc I have had that. I'm going with Arimidex induced arthritis. I love my onc but he has a tendency to not tell me things. He doesn't discuss my cancer markers and never tells me what they are
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TripleP,
I'm voting for arthritis. I recently went to a doctor (hand surgeon/plastic surgeon), who evaluated me and dx'ed arthritis. I now regularly take naproxen sodium and it is much improved,
As for your doc not telling you things, why don't you just ask him and let him know that you want the information. I'm assuming he does tumor markers (not all mo's do) and it's important that you know where you stand. Take care
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Dearest ladies, the SC Bulb Show's theme this year was based on Edward Gory's "Evil Garden". If only I could have bottled the heavenly scents that permeated the plant house yesterday and send them to you! The pink hyacinth was especially out-of-this-world fragrant. It was 79 degrees, and how glorious and wonderful the warm, warm sunshine on my face and arms and legs felt...like nature kissing me. What a day to be in a garden.Love,
Valerie
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Anyone here from the UK? Specifically the Nottingham area. I'm suppose to be there for several months and I'm looking for an oncologist to do zometa, ibrance and faslodex and I'm also looking for alternative healers. Please PM or post if you can. Thank you. Rachel
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Valerie, Those flowers give me hope that spring is coming. Last year I neglected my garden because I was in a lot of pain. Thank goodness perennials need so little care in the spring. This year I look forward to getting out there and digging. I will be armed with little bags of Irish Spring to keep those pesky deer out of my gardens. Although my flowers will be a far cry from the beautiful ones in the picture you posted, I can't wait to see those little green sprouts poking through the soil.
Lynne
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Valerie- the Flowers are gorgeous! Thank you for the picture! A few more weeks and we will have color in the garden again. Spring is so welcome...new ways to stop thinking about cancer.
Thank you ladies for the HRT comments...you are right...maybe we should have been more wild and crazy if it wasn't going to make a difference anyway...or we could do that now
My liver enzymes were up this month and my onc suggested that the tylenol I was taking with the ibuprofen could be the reason. So...now it is Aleve with ibuprofen. Seems to be working for the pain. A good thing. Just wanted to pass this along for the group as I know some other have been using the Tylenol combo.
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Question: My alk phos keeps coming down. But my tumor markers spiked 50 pts. Alk phos was how they determined a need for pet scan to dx bone mets. How does this work?
Rachel
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Rachel - Alk phos going down is a good indication for bone mets. I'm not on Ibrance but what I've read is a lot of gals saw their TMs going up after starting Ibrance before they went down. Can't help you for an Onc in the UK, but my understanding is that Ibrance is not approved there.
Valerie - those flowers are indeed beautiful.
Lynne - I have the same problem with those pesky deer, will look into the little bags of Irish Spring.
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Hello, everybody, just a short note to say that the case manager from the rehab hospital told me that my 85 year old mother with mbc is now 100 percent reliant on other people to live. On Feb 4 before her lung collapse and her stay in critical care and then the acute care hospital, she could walk back and forth to the bathroom, feed herself, pull on most of her clothes, walk down the ramp with my brother holding onto her with a little belt, get in and out of the car, exercise and so on. Now, she has to be fed, dressed, and must use a bed pan all of the time. The case manager says they are aiming at wheelchair bound status for mother but it looks at if she will be dependent on my brother and I for everything. I don't think there will be any more chemo for my mother. I really don't know what else we can do for my mother, but we will try home physical and occupational therapy before we ask for home hospice. It is unimaginable to me how so many doctors and nurses could have missed the lung infection or pneumonia. As you can imagine, I am devastated. I really don't know how we will cope.
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Kathryn,
Be sure and let your Dr know you are taking Aleve and ibuprofen combo, they can both be hard on the stomach and cause stomach bleeds, they are also both hard on the kidneys. I was doing that combo when I fractured my back and my Dr had a fit when he found out. It sounds like you may need a prescription pain med.
Marilyn
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