Bone Mets Thread
Comments
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emac877, have you tried the "Mules" or "Clogs" made by Easy Spirit? They slip on, so no bending down to tie them. I wear them all the time and have never felt unsteady in them. When my hip pain got so bad that I couldn't tie my laced shoes any more, I tried these.
I got them on Amazon and will try to post a link, if I'm allowed or if anyone is interested.
It's a tough choice about the traveling, prairiesea. I totally get it. Lately, I've had a "hankering" to see a couple of friends from my long past. We worked at a summer camp together. I think you'll know what's right for you. I don't want to have any regrets about that I didn't do.
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All good reminders, as usual PatGMc. Thanks for the reminder to be joyful. I'm so sorry to hear about the violence in your nearby grocery store....it is very saddening to think of the pain that likely produced that and even more the pain that it is causing.
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And thanks sunshine. Yes, in the absence of much help from oncologist's office, I think I've arrived at a plan that steers a course between what he seems to be expecting and what makes sense to me. He and I can hash it out Monday.
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Best wishes, prairiesea. I hope you are able to enjoy your time while still taking care of your health.
Does anyone have experience with a PET showing small uptake where a CT showed no lesion? The MO wasn't concerned (and she's usually not one to shy away from bad news; has a very direct approach) and attributes it to perhaps inflammation, but I am worried a new lesion is forming despite my new treatments.
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Wow leaned over to pick up my coffee and my rib broke felt it brake what a strange feeling Then the excruating spasms started there next it i guess that happens. This was not fun at all as i am sure many of you already know. Hoping i am done breaking anything at least for awhile i need a break from breaks
I guess my rib was fractured from slipping on blueberris a few weeks ago so it snapped quite easy.
At least i know this area had a reason it was hurting and may not be progression doctor was worried about.. Not thrilled to have another broken rib but at least the first broken one is almost healed and maybe as i said i just got hurt from falling not specifically because of mets in that spot other than the bone being weak from the mets
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Beth,
Sounds painful! Hope you heal quickly and get through the coming months with no further breaks. Who knew blueberries could hurt us!
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This is one of my paintings i named "Looking for Hope " - hope you dont mind me sharing - i usually just share in art area but this one means so much to me its different - its the picture in my avatar i and its a reminder to me to keep hoping and relates to this post
Met my pallitive care doctor ( feel weird i even have one i dont know why i was sent one it scares me) did not like him at all he ripped every ounze of hope i had otta me in 20 minutes. He just kept saying about death and not being under illusions that i may meet my end soon. I understand all that but i told him i was still hopeful for some time as cancer doctor said she had a few things to try and seemed hopeful i may do well and i have seen many ladies here do well that are worse off than me living that i choose to keep some hope. He still did not seem to think i should feel so strongly about time and hope and should be concentrating the other way and excepting my upcoming doom. Once i make a will etc.. and plan the death stuff out whats left to concentrate on on that end I think once those things are done i will still be hoping - i pointed to my painting "Looking for Hope' and said thats me it will always be me i told the title and what it means to me - i explained to him its not right to try and take away someones hope - Hoping is my choice for me
Its just i know that everyone says you have to not be in denial and be realistic that your life is dangling and so fragile right now but i always feel having hope is not denial its just plain hoping - because truly i see many woman on this site in stage 4 puttering along and still living - well i think and HOPE this will be me -it might not be but i still choose to Hope - or hope more treatments and cures come for everyone - i choose hope - so yes this painting is me ( its really my sons eye lol but close enough lol ) Hoping
DOCTOR FIRED - definately looking for a different one, i am not a violent person but i am quite positive if i keep him i will punch him in the nose
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I’m so glad you fired him. I’m angry that he even said those things. You can live a very long time with this. He needs to get out of the field if he can’t provide hope.
I love your painting. Hope is a wonderful thing to have.
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beth 1965, WOW! I love your painting. It says "Hope" to me, too. I'm rather shocked at your palliative care doctor. I just finished reading (again) a book by Dr. Sunita Puri, a palliative care physician. It seems that their job is first to LISTEN to you. Then they are to work with you on maintaining your QOL and not to focus on the "end". Yes, we need to think about the "what-ifs", but if the what-its aren't here yet, then let's see how to best live in the present.
If you're interested, the book is titled, "That Good Night: Life and Medicine in the Eleventh Hour". It resonated with me.
I hope you can find a palliative care doctor who is better suited to you.
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Thanks iwrite and yesdangerous blueberries lol
Thanks KBL i feel so much the same this was very hard for me especially being new to stage 4
Sunshine99 well worded that is exactly how i think it should be. Thank you i will definately look for that book i think it sounds like an interesting read
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I am with you beth1965. A quote about “denial" that I think I got from someone's post right here on BCO - “denial has given me a pretty good life so far so if I am in denial this is where I am going to stay right now" I'm paraphrasing because I can't remember the exact wording but that was the gist of it. I think we can know the odds and be realistic without giving in to complete doom and gloom.
Another “hopeful" thinker with cancer was Stephen Jay Gould. I found his essay “The Median Is Not The Message" early on in my “journey" and it resonates.
https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01
Someone has to be an outlier, someone (many of us) will be on the right side of the curve - why not you, why not me?
There's time for stark realism, but why not start out with that little bit of hope.
And - lovely painting...look toward the light
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Oh Beth1965, that was truly a shitty experience. And that’s all I have to say about that.
KBL, Sunshine and Olma have said it so much nicer.
No hugs for you right now. Sending bone strengthening thoughts and vibes instead.0 -
Beth1965 this is a dreadful experience you have only been diagnosed a month. When I was diagnosed MBC I asked my oncologist nurse about hospice care she went to look at my file and said why would you want that, cheered me up no end. I would say my attitude is optimistic rather than one of hope or of denial.
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Beth1965 your painting is cool, and I hope your rib heals soon. I've had a couple if those and know the misery Ugh
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Also, I would say it was a box-ticking exercise by the oncologist's team everyone is referred to palliative care rather than looking at each case individually. That is not denining the need for a referral to palliative care but when the referral is made, is very important I think.
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Oh beth, I’m sorry! I hope your ribs heal quickly with minimal discomfort. I’m so glad you fired that “doc”! If it’s one thing no one needs, it’s negativity and thoughtlessness. There is nothing wrong with hope and optimism! Sending happy thoughts your way.
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Beth1965 - I LOVE your art, and I LOVE your message. So glad you fired that doctor. If there isn't hope, what is there? I hope your rib heals quickly!
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Olma thank you for the link
Thank you everyone for listening to me rant abit and all your well wishes
I really appreciate your opinions and ideas and understanding it helps me to get through this
Sending hugs to all
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Beth1965 - I second the shock. That doctor needs to find a different specialty, perhaps hospice. Palliative care should not mean a lack of hope. If anything, it should support hope. It's very different from hospice care, which typically focuses toward the end of life. The whole point of palliative care is the understanding that you are choosing treatment and choosing to continue to fight disease with the hope of improvement. The role of palliative care should be to support the patient in pain management and making treatments more comfortable. There is a component of it that acknowledges that many patients have serious illness but end of life care is not the focus, pain management and support is. It's frustrating to me that so many in the medical field miss this and treat palliative care like hospice! (Sorry, I'm stepping off the soap box now). I fully support you firing them.
Sunshine- I have not tried Easy Spirit shoes. I have a few pair of Brooks running shoes that I wear to work and I also love my Doc Martens now that the weather is cooler. I'll have to look at the Easy Spirit. Thanks.
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Hi everyone, time has flown by and I didn't realize how much time has passed. Thanks for all your suggestions and replies SandraF, moth, emac877 cowgal. I really appreciate it.
I'm scheduled for a CT scan really soon now, and we'll see. Yes, I should keep in mind that you mentioned the bone strengthening Xgeva or Zometa.Thank you!
Yes, cowgal, haha, we definitely could use better side effects!
Also, an update: What I've found in the last few weeks where it has happened multiple times, is that after using a muscle/area too much, it gets extremely tired. I was pulling up something heavy and then after that my right rib/side was achy tired for 2 days, but then after that it seems like it has recovered. Another two times, I did more walking than usual, and my left knee was so tired, I had trouble using my left leg. But after about 2-3 days, it got back to normal and didn't have that wild deep ache anymore. Another time, I lifted something and my lower back ached for 2-3 days, during that time, I could barely go from sit-to-stand position. So strange! And because of the deep ache, those days I feel extra tired. I do have general tiredness all the time -- except for the moments I just mentioned -- there are actually some OK days, too.
After all that, it doesn't look like it's my bones, but my next scan will tell us if things have changed.
Hi, Positive2strong, I've been on it for more than 6 months! I did find it hard for the first several months but also due to shock of the MET diagnosis, I think, for me. How are you doing? Are you having some OK days?
Thanks again everyone
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Newday
I had surgery on Sept 9 and I have been off Ibrance for more than a month. I think I will start taking it again in a week.
I have still gotten my Faslodex shots. I have no idea if anything is working.
I am trying to heal from the surgery. I am not in much pain but still walk with crutches. I am doing more each day but if I do too much I get faint.
the worst is what comes next and if the drugs will work.0 -
Hi Postive2strong,
Sending healing and warm vibes out to you. And, fingers-crossed that the meds work for you, too. ❤️0 -
RK- sorry if I am late, how is the post radiation? I hope it killed those nasty cancer cells. I read somewhere in bco, that vitamin c is highly recommended after radiation, it said high dosage of vitamin c through iv help your body recover after radiation therapy. Please double check with your mo and pcp. I wish I knew this trick when I did radiation.
Positive, sending you healing vibes. Faslodex is a strong medication, for years it was used as a single therapy for MBC.
Sending vibes to whoever needs.
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Anyone get a bone scan after 3 months or so and have it show “pseudometastasis?” I feel great, no bone pain, normal labs, improved breathing. my recent bone scan 3 months after starting taxol shows diffuse sclerotic lesions. The CT shows sclerotic lesions but pulmonary and liver mets halved or gone. I believe that this is a known phenomenon and would continue therapy with f/u scan in 3 months. Of note, there was 3 months of failed hormonal therapy no f/u bone scan before starting chemotherapy- so i think it did spread at that point.
thanks
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HI Bmpntherd,
I have never heard of the term pseudometastasis but perhaps they are referring to the fact that the sclerotic mets won't disappear from the scan, even if healing.
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snowdrop,
Thanks for info good to know about Faslodex
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emac thank you that makes a lot of sense very good description of hospice and palitive care
Positivestrong I am new to faslodex 3 treatments in and wondering same thing about how or when do you know if it’s working. I know I have areas that still hurt and wonder if the shots are working
Snowdrop I agree that is good to know it gives me much more confidence in the faslodex treatments trying to be patient.
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I read somewhere that it takes 3 months minimum to see if Faslodex is working or not. Fingers crossed it works great for all of us.
I went in this morning for my first shot. I was surprised to learn that they want to do a lab before each shot appointment. I am so frustrated today over this because it takes forever to get the lab results. So a simple injection takes a couple of hours when I should be at work. I got out of labs today only because I spoke up to say that I had just had labs 2 days ago. I also have labs before the Xgeva shot (which I had last Thursday), then my regular monthly appointment with the MO so lots of labs in one week.
My other surprise today was to learn that the Faslodex shot is actually 2 shots - one in each hip. The only good news is that it didn't really hurt because the nurse sprayed me with lidocaine spray, and I had read the tip about relaxing the hip that is getting the shot.
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I believe it's just estrogen that fuels it and diets etc make no difference when it is MBC, maybe you would be happier with an integrative oncologist.
I am a strictly scientific evidence-based treatments.
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Gokale - Thanks for the info - 3 months sounds like a good amount of time to get in our system
Good luck to you and everyone
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