Bone Mets Thread
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my iPad is having a hard posting to this board heading to a desk top.
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Happy Hannukah! Peace, love and light to all. Love spinning the Dreidel.
Myra, I believe the dose of Madame X is based on height, weight, disease activity and the schedule. I'm getting 2,000mg twice daily with 7 on and 7 off. I spoke with an ONC pharmacist (I'm an NP) and he said it's based on numerous variables and physician preference and experience. I have innumerable sclerotic bone mets with some lytic mets (my mets more resemble prostate mets! Go figure) and now bone marrow mets. So, I need a big dose really quick to help get my blood count up fast. I've been needing too many transfusions of red cells and platelets to keep me safely alive without having complications related to the severe anemia and low,platelets. They believe the Xeloda won't cause a drastic paradoxical drop of my blood components. Phew. Hope I explained that correctly. The ONC pharm took a long time to help me understand, ,think I understand. Anyway, if Xeloda fails it's Taxol with maybe another IV chemo tactic agent.
Here's hoping we all have a week of no pain, no progression of disease, good karma and lots of sunshine, light and love. (I aim big
Beth
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Thx Beth. Hope it works quickly for you.
I wish all my friends the miracle of Hanukkah. May we all see the kind of miracle of Heavenly Prayer that kept the oil burning for 8 days.
We just lit the first night candle with Mallory via Skype. It was amazing. Jews have a saying "next year in Jerusalem ". My saying is next year in Florida for my whole family.
Much love, Myra.
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And here's to next year in Florida for you, Myra! Lifting a glass to you and your family. It's a glass of iced tea, but it's during work hours and it's the thought that counts!
It's Monday here and I'm just not feeling it work-wise....
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Happy Hanukkah!
My friend just sent me a picture of her Menorah which was her great grandfathers. Beautiful. Myra, how sweet to light it with Mallory and yes next year in Florida.
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Good morning,
Thank you ladies for the information on Biotin! It doesn't appear to be worth the risks...adding it to my collection of meds to take to the pharmaceutical recycling place. The fewer things to take, the better. Hope this is a better week for everyone!
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I'm a little nervous, this afternoon I meet my new oncologist since my other onc is retiring the end of this month. A thought struck me as I was getting up this morning, I'm going to meet the woman who can save my life or at least give me many more years. What a huge responsibility she has and I'm quite overwhelmed thinking about all the physicians, nurses, technicians, aides, social workers, spiritual advisors, psychologists, etc who are charged with saving or prolonging our lives.
Feeling a little pensive this morning so thought I'd share the impact changing oncologists is having on me.
But not to be a downer, I had horse therapy this weekend. I went to a ranch with a great friend and we just loved up the entire herd (6) and fed them apples and carrots. The oldest horse there, Wheetie has no grinding teeth any longer so we practically pureed his apples and carrots. These beautiful creatures have their winter coats now which make them look like a Russian Czar in his fur coat, thick fur everywhere and some of it curly. I think the horses enjoyed our visit as much as we did.
I had horses when I was a teen and used to get great pleasure and comfort from riding, swimming and simply grooming them.
I would have loved to hop on the back of one of the big boys but there's no place to hang my handicap parking tag so I decided that was a bad idea. Besides my DH and RO would have killed me.
If you are an animal lover, seek out a farm with a petting zoo or a place where you can totally interact with them. There's something so soothing about caressing and hugging animals, large or small.
Enjoy today!
Amy
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Good morning all,
Happy Hanukkah! and happy week to all.
Beth - it's so nice to hear from you but oh so sorry for what you're going through. Good luck with Madame X.
I try to keep up with the thread but am still very tired and sleeping quite a bit. My body really took a hit. My sister spent the week-end with me and is still here this morning, spoiling me with good coffee, good food and great company. One can get used to this very quickly LOL.
So while I am not addressing you personally, you are all in my thoughts but mostly lurking for now.
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LindaE, we're thinking, hoping and praying for you too. Take it easy, sleep when you need and don't feel a bit guilty about it. Sometimes sleep is the BEST medicine.
Love to you,
Amy
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LindaE take care of yourself it's lovely that you have your sister there. Let yourself be spoiled you deserve it😌.
Amy I know what you mean. I have two Morgan's and they are staying at a good friend in Oregon she has fifty horses so two more wasn't a big leap. I miss them terribly and am really torn as to what I should do. My oncologist says I will never ride again but she tells me all kinds of crappy stuff I'm not convinced. I miss sitting listening to them eat grass and the smell of them. Something else cancer has stolen from me. 😪
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LindaE- Thanks for checking in I have been thinking about you. Hugs.
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Wendy, Whenever someone tells me I will NEVER do XYZ again, it gives me the fortitude to prove them wrong. Your precious Morgans deserve you and you deserve them. I think your onc is wrong and I'd love to have you prove it. In fact, when you are able, send a picture of you riding them again.
Amy
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I love all the photos! Dune, your little buddy is adorable, Rachel your kids are too cute, and I would love to meet up if I'm up to it in January. Dee love the bike, I took a course once, but failed it.
Whoever gave me the advice not to give the book to my hubby on his birthday, thank you! I will give it to him beforehand. I don't have a lot of money to spend, and my daughter asked me "why sin't a card enough, why does he need a gift?" so I'm giving some serious thought to that. Trying to stop extravagant gifts. I do think he could use a massage so I might just buy him a gift card for a massage, I've done that in the past and he likes that. I ordered a whole bunch of xmas gifts for my kids lol, every year I say I'm going to stop, but this year, I just want to do this. I will buy stocking stuffers for my hubby.
I have to buy gifts for my 2 sisters as well. Just going to send my dad a card w a photo of the kids in it and just send my brother a little money. Ugh too many gifts, but I am trying to enjoy the giving, that's what I like.
Chronic pain continues, but I think I'm getting used to it to some degree. I hope everyone has a pain free or low pain Monday.
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Happy Hanukah to those who celebrate!!
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Having an issue w psoriasis on my scalp and in my ears. Does anyone have home remedies for this? I don't want a prescription right now.
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Hello Ladies So I have a question how do we get some of what Mr. President Carter got?
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This is what Pres Carter got. Its not for all BC, but here is a trial I found, if it pertains to anyone:
Keytruda for Metastatic Inflammatory Breast Cancer
A Phase II Study of Anti-PD-1 (MK-3475) Therapy in Patients With Metastatic Inflammatory Breast Cancer Who Have Received Prior Chemotherapy With Clinical Response (NCT02411656)
Summary
Pembrolizumab (Keytruda) is an immunotherapy that helps the body's immune system slow or stop cancer cell growth by blocking a protein known as programmed cell death receptor (PD-1). It is approved for treating metastatic melanoma. Early studies suggest Keytruda may also be effective for treating metastatic inflammatory breast cancer. This study is looking at the safety and effectiveness of using Keytruda to treat patients with metastatic inflammatory breast cancer.
Visits every 3 weeks 
Research sites:
Call BCT: (415) 476-3793
What's Involved Contact information: Call BCT at (415) 476-3793
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Lindalou, just got back from downtown for radiation and thank you so much for the suggestion that they lift me from the sides from the radiation table. I was dreading the radiation due to the pain of getting up from the table, but was so happy and relieved this time, they were able to get me up from the sides without pain (didn't have to take the morphine, either), and it was all due to your suggestion! Thanks so so much!!!!!
Too tired to catch up on all the other posts today, will have to catch up later - busy day with radiation, mother in hospital, etc.. etc..
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3Holly, You are so welcome, and I'm glad it worked. That's the only way I can do it now, with 2 techs on either side. Looks like I will need just a few rads for a lesion on my rib where I've had previous radiation. Sim later this week.
Thanks Stefajoy for the info on Keytruda.
Amy and Wendy, Loved your stories of the horses. I never owned one but leased for a few years. Oh how I would love to ride now. I leased an Arabian named Spitfire. Wendy, now I want a Morgan. Between me asking Terre for a cat and now you for a horse, well I could just be a happy camper!
Christina, sorry have no suggestion for psoriasis. Perhaps others have a suggestion.
Beth, it is so good to have your professional advice and information. I wish you well.
Amy, are you feeling any better?
How is everyone doing tonight?
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This is my baby Era not a good angle but I think she's pretty however I filmed her. Miss her badly.
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Hydranne, sorry about your recurrence. That super sucks. I hope you can look into this trial. Keep us posted.
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Wendy - Era is beautiful. I used to ride in my younger days and loved it.
Lindalou - Good luck with rads.
Hydrane - that recurrence sucks! But congrats on your upcoming retirement.
Sweet dreams to all.
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As I had previously posted that my bone scan results showed decreased intensity of the nuclear tracer at my T11 with no new lesions elswhere, however, I also read in my report (once it was released via MyChart) that there was "Mild increased soft tissue uptake just superior to the posterior iliac crests is noted, of uncertain significance"
Has anyone ever read this finding on one of their reports? Should I be nervous?
cjanet - there is a website I shop at called "iherb.com" that has many natural health products. One is called Home Health, Psoriasis Cream and has 2% Salicylic acid, plus the following ingredients.
Inactive Ingredients:
Allantoin, beeswax, cetyl alcohol, citrus grandis (grapefruit) fruit extract, cod liver oil, cymbopogon schoenanthus oil, echinacea angustifolia extract, rosa canina fruit oil, rumex crispus root extract, simmondsia chinensis (jojoba) seed oil, smilax aristolochiifolia root extract, stearic acid, tocopheryl acetate (vitamin E acetate), triethanolamine, water.Don't know if this would help you, but I hope.
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Wendy3 - your horse is very pretty and so is the area she is staying. What part of Oregon is she in?
LindaE - hope you feel better soon.
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I have had a chronic bad lower back problem, since my Tram Flap surgery in 2002. About three weeks ago my back started hurting worse that ever. Usually if I tweak it, it is better in a couple of days. The current pain is debilitating, does not get better with rest or heat, and I am taking two Oxys just to make the pain tolerable. A bad tweak or time to check in with my Oncologist??? I am stage IV, because I had a tumor in the opposite side lymph nodes to my original dx.No distant or bone mets yet. Thanks
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karenmarie, I would err on the side of caution here. Check in with your oncologist.
I will try to get back on later. My cough is still giving me a fit. I will try to sleep.
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thank u for responding, I hope u got some sleep and your cough is better!!!
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Good morning all!
Karenmarie - Any pain that lasts more than 2-3 weeks should be checked, bearing in mind that it's not necessarily mets but whatever it is, it should be investigated. Wishing you the best and please keep us posted.
Dune - I can't imagine coughing for such a long time! It must be exhausting. Are you still on antibiotics?
Patty - thinking of you and I hope you're home comfortable and feeling better.
Jazzy - I've had things pop up on bone scans that turned out to be benign. It has to be compared with other imaging such as a scan, that's my experience. Good news on decreased intensity!
Loves - how is your leg?
Lynne - thinking of you and hubby! We are here to support you, don't forget.
Myra - I hope Madame X is gentle on you. Any news on your biopsy?
Good luck to all having rads and praying SEs disappear quickly and that the rads benefit kick in quickly. Good day to all!
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I have had stomach cramps for 8 days now, (they come and go) thinking this was from rads to pelvis. Yesterfday RO does not think this is why- From last Monday to now I have had the cramps they come in waves... but I developed yellow foul stools that are very loose and quite frankly I feel horrible. I also had the Xgeva shot on Friday. This loose stools started over the weekend. RO thinks it's the Ibrance, I do not. My blood work on Friday showed all good except for the obvious white cell count but liver and all numbers were ok. I lost over 3 pounds in a week and have a call into my MO again today. My grandchildren had a stomach virus that lasted quite awhile with stomach cramps so I may have picked this up from them when they came at TG. I did not have SE from my first round of Ibrance. All I know is I want to feel better.
I have a pain in my back/rib that comes and goes. Sometimes it feels like a wave of heat there, and I can't pin point the exact pain, this am I could pin point it and then advil takes it away some. Does anyone ever get those type of feelings? Almost like a hot flash in your back? Especially if I am laying on it.
Hope everyone is having a better day/week/month than me. I just want to feel better.
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Aw Loves, sorry. It could be a combination of rads and a nasty bug. You will feel better but it takes time, you've been through a lot lately. But I hear you, I also want to be well again but my body is taking its sweet time to recover. We will get there! Sorry about that back pain, don't know what that could be but you've been mentioning it lately. What does imaging show there?
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