Bone Mets Thread
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Tinyturtle a lot of your pain is from the Tx...Aromatase Inhibitors to suppress estrogen really do a number on you in terms of pain, stiffness, etc. I have to use heating pads, the La-Z-Boy message chair, and a special ointment (Rx only) that I get from my palliative care doc to get thru the day. If I'm having a mild day, I just get by with rubbing CBD balm or Topricin cream (you can get that at Whole Foods Market) on to the troubled areas. I get weird pains a few days after my chemo infusions that just seem to come out of nowhere.
I have a walker with seat that I use when I go out walking, and, boy, does it come in handy. Just got back from Palm Springs a couple weeks ago, and I had to use the walker while we were at the Living Desert Zoo and Botanical Garden. VERY LONG WALK, and I was thankful I could lock the walker's wheels and sit down for a minute or two when I needed to.
My stiffness, especially in my hips and lower back has gotten worse. Some of that is because of tumor progression. As far as working thru the pain, I don't. I know my limits. Yes, I try to keep moving, and I make sure I GET OUT of the La-Z-Boy hourly to help keep some of the stiffness at bay, but I essentially listen to my body, and when I cries out, I slow down. Stretching helps. I can no longer stand at the counter and chop vegetables, sigh. I have to sit at the kitchen table. And my husband has to do most of the dishes (especially the big pots and pans, which I can no longer lift because of my back) now.
That's just the way it is these days. I don't like it, but that's life with Stage IV.
L
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Just back from mo. I told her that I was walking slowly for 1 1/2 miles and sitting down 3 times during the walk. The next day I’m beat. Last year I could make 3 miles , no stopping . I don’t know of it’s mets or letrozole. She’s scheduled an MRI to check against the one I had in Dec. maybe some rads. I realize that I need to take shorter walks. I can no longer enjoy a walk with a friend. But one friend said she’s ok with the 10 min rest periods I seem to require. That helps since our walks are filled with stories and laughter about our kids and grands.
Up to 2 Tykerb. Having cramping but hoping my body will calm down. Who knew that this would be my hope for this coming week. I’ve planned some trips this spring. Europe, California. I Seem to have picked up another cold or maybe it’s spring allergies. But we had 6 inches of snow yesterday so what is blooming.
Sending hugs to all
Maire
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tinyturtle, it’s important to keep moving. I find swimming and water aerobics to work the best for me in addressing the joint and bone achs from the Femara. If you love restorative yoga, go to that and maybe have a word with the teacher in advance. Walking with rest periods in great. The Stage V Fitness thread has the science recommendations at the top of it.0
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Why do I find myself feeling sorry for everyone else? I am still trying to work, mostly for the normalcy of it you know? We also need the money! I am in a back brace and using a walker, have a desk job so it's not too hard. When customers come in, some ask "gosh, what happened to you?" I've gotten to where I just flat tell him "I have cancer, its in my spine" and then *I* feel sorry for them! They are always shocked and not expecting me to just spout it out I guess. The "oh my God, you poor thing, I'll be praying for you" starts and I end up consoling them! ha!
I am hoping and praying this radiation works quickly so I can get out of the back brace and walker and stop having to answer questions!
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Oh, BigPeaches, sorry that people are being clumsy with their responses. But it's not your job to comfort them - if you don't want to talk about it just thank them for their thoughts and move back to business.
I hope that the radiation works to get you out of pain and back to your own independent self.
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Bigpeaches, I agree with Piggy99. It's not your job to console others, but KEEP ON TELLING THE TRUTH. People NEED TO KNOW that cancer (and STAGE IV) can happen to anyone - right out of the blue. And many people have to WORK while fighting the disease. Yes, they'll be shocked, but so what?
We know that 1 out of 8 women will get bc in her lifetime, BUT THAT DOESN"T INCLUDE ALL THE OTHER WONDERFUL CANCERS: bladder, colon, lung, ovarian, kidney, prostate, leukemia, soft tissue sarcoma, glioblastoma, lymphoma, pancreatic, etc., etc., etc. When you take all the cancers into consideration, I'd say the avg person has maybe a 1 in 5 or greater chance of getting some form of cancer in his or her lifetime.
L
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I posted on a different thread but thought I might get some help over here too. I'm Stage IV de novo, bone only. So after a couple weeks of tests I found out the cancer has spread to my bone marrow and yesterday I started Taxol. I'm devastated. Tumor marker up 137-176-337-434. Bone marrow biopsy last week positive for breast cancer cells. Platelets dropped from 224-169-57-48-43-42. 224 on 2/16 to 169 on 3/16. More importantly my hemoglobin is too low and I will get an infusion next week. I only got 6-7 months on Letrozole, I'm so sad. My onc said cancer doesn't normally "turn on a dime" like this but guess what? It did. Literally in a month's time I went from a great CT scan with healing bone lesions to a port placement and Taxol. My head is spinning. Anyone else here with marrow involvement?
Jill
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Jill, I have no experience to offer but if you haven’t already tried, you can use the search option to search the site by keywords. Maybe you can find a specific topic or bco member dealing with this. Good luck 🙂
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Jill- So sorry you are experiencing such a sudden turn.We all expect it to happen,but hope for a long run on our first treatment. That said, many have seen great results with taxol! It can help get it under control quickly You have a lot going for you. It isn’t in soft tissue and you haven’t been heavily pretreated. Those are big factors.
This is very hard and emotionally you are still dealing with this new world. Sending you many good wishes and virtual hugs. Others will chime in with good advice!
Hang in there!!!
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No advice, just sending you huge hugs OOOO!
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jill, i also have it in the bone marrow of my right hip and femur. Taxol failed in less than 3 mos, so now I'm on Gemzar. Will have another scan later this month. I just have to ride it out.
My head aches from brain tumors, so i must sign off now.
L
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Jill,
I am so sorry to hear of this rapid change in course. I am a newbie (Dec '17) and still working on accepting my MBC diagnosis. It is all so surreal. I have my first scan to assess response to Ibrance/Faslodex next Monday. The things that has helped me the most are my husband-rock, this support group and practicing focusing on what is right in front of me today.
Sending you a virtual hug and sharing whatever strength I can find with you.
Warmly, V
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Jill, so very sorry to hear about your unexpected progression. Looks like your doctor is doing the right thing moving you to a more aggressive treatment to get the cancer out of your marrow. I don't have any personal experience with this, but my physician sister's "job" is to talk to her oncology friends and collect stories of hope. One of them involved a lady with bone marrow infiltration who came in very symptomatic but was successfully treated with chemo and then put on hormonals and is still doing well several years later. I hope the Taxol gives you great results and then you can think about something like Faslodex and Ibrance for maintenance.
Hug
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Jill, I had a hip MRI that saw "islands that could be mets" in my bone marrow in my left hip. I have a pet scan Tuesday to see if there is any indication of uptake. They also saw a hip met that only measured mm, no cm so no action yet. I hope Taxol kicks their butts for you.☺
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Tinyturtle,
I am no onc, but I do have high enough pain levels to be on Oxycotin. However, I'm wondering if you are having pain in a known met area, or if your pain could be muscle-related. I must confess that the low dose of Oxy also helps with my arthritis pain, so I know what you mean by getting up in pain and lying down with it too. One thing I know for sure....your onc should be aware and help you to get it under control.
I hope you get to the bottom of it soon.
P.S. I wish I was an excel user who could answer your other questions. I walk, butdon’t push anything these days...
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My pain level is high enough to be on opioids (I have "too many mets to count" according to my doctor, as well as pain from other damage done by the tumor). My MO told me that the best way to tell if a new persistent pain was bone pain from mets or muscle pain because I had been inactive for several months was to take one ibuprofen (not aspirin, tylenol, or aleve). If adding ibuprofen lessened the pain it was most likely muscle pain and he wouldn't be quite as worried.
This came up during our discussion of recent pain in my mid-back the past few weeks. I had great results from Taxol (even showed some signs of healing) but I had to skip my last two doses due to an atypical severe side effect that arose after tolerating it well for several months. When I mentioned that I had been experiencing a new pain in my back for a couple weeks he got extremely worried and started talking about accelerating my next scan, but he asked me to try this first.
Don't want to tell him that the pain is still there. I just finally got back on my feet and my next regular scan is later this month anyway, I'd like to pretend things are somewhat normal as long as I can before I have more dumped on me.
Good luck with the taxol!0 -
chicagoan.....thanks so much for that information. I'll see if that product is available in Australia. It sounds great.
Z ...I'll have to come back and check out your article. Anything promising for bones sounds good. My Ibrance/Femara treatment is said to be slow working and I have a lot of mets.
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Lita.......Just sending you love and lots of it.
Jill....sorry I missed seeing your post. I'm sorry you have this progression. I have no advice, only Iove, to give.
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Taxol failed me, so now I'm on Gemzar. Will have new scans later this month, too.
I like the ibuprophen idea. I will definitely have to try that. I don't like to use opioids b/cuz they just knock me out and don't work on my deep nerve pain. I use MMJ cbd oil. My palliative care dr gave me an Rx of topical Voltarin Gel. It's pretty strong and works well, but it has SEs, too. Because it is absorbed by the skin, it can go into the bloodstream and affect your liver and kidneys, so I only use it when I know I will be on my feet a lot or I'm in a lot of pain in the morning when I first get up.
Having a lot of pain in my right hip and femur. They found abnormalities in the bone marrow, so I'm hoping the Gemzar can get that under control.
Bone mets don't usually kill you, as they say, but they can make your life miserable.
These days, I'm more worried about my brain mets, which are growing again. All the symptoms are back, sadly. If more mets spread to the brain stem area, well, that's all she wrote. I do have all my paperwork in order (DNR, Advance Directive, Trust, etc.), and I purchased my urn and niche at the mausoleum. So I'm good to go at any time since my palliative care dr said, "We just don't know how much time you have left...you could go in 6 wks, 6 mos, 16 months or maybe 6 minutes if one of those brain mets decides to start hemorrhaging again." (I had some bleeding when my brain mets showed up last August.) Whole brain rads and steroids helped back then, but since they can't radiate anymore (it will cause severe tissue necrosis and brain damage) I'm taking it one day at a time, being grateful for the days I've already been given.
L
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Lita -
I don't post hugs and support as often as I think about you. This is partly because you've connected with so many so deeply it seems redundant. However, every now and then I need to tell you what your posts, your attitude ... the way that you share your experience, your perspective... mean to me. You give strength to all of us as well as information that will transform us and change our path for the better.
>Z<
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Lita - As I am new here, I don't 'know' you super well, but I do know that you are an amazing human being! Your posts are positive, and exactly 'what the doctor ordered' for those of us battling through this MBC...I am sending my prayers, positivity and hugs your way - OOOO
janice
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Lita, I was just wondering how you were doing this morning!! It's been awhile since you've been "ready to roll" and I'm so thrilled that it ain't yet!! I vote for 16-plus very good months, and its amazing how well you have done, which obviously is helped mightily by your wonderful attitude!!!! Thank you for all you have inspired,,,
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Can't blame you for not liking opioids Lita, when I was on a fairly heavy dose of morphine I hated how spacey I felt. Wasn't sure if I had chemo brain or morphine brain because it was so bad that I literally had to talk myself through easy tasks. I've been steadily weaning myself off the morphine (down to one a day now) and mainly relying on the fentanyl patch, which doesn't seem to have the same effect on my brain and provides better pain management stability (until a few hours before it wears off haha!). Don't know if you've tried it? That plus gabapentin for the nerve pain had been working for me until this darn new back pain. If I need more in the future, we agreed that I would increase my patch dosage rather than increase the morphine. I hate what the patch does to my skin, gets so irritated and itchy, but I still wouldn't trade it.
Good luck with the Gemzar!
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Thank you all for your kind wishes. Piggy99, that is my onc's plan-Taxol to rid marrow of cancer then onto Faslodex and Ibrance. He's had success with this and is optimistic. I'm feeling tired after first chemo on Tuesday but pushing through. I hate my port, feels weird. I guess I'll get used to that too. Hugs to all you lovely ladies, I know I'll always find an understanding ear here.
Jill
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Lita,
I echo what the others have posted. You are amazing, and I have made a choice to follow your lead with regard to my attitude about MBC. I am grateful for every new day, laugh as much as possible, and have decided to do something every day I have left to give back some of the blessings I have enjoyed. I have ‘adopted’ a local family in need, and I now have 3 ‘nephews’ that I am spoiling rotten. I never had kids, but I had the best Easter EVER buying baskets and lots of chocolate bunnies. Next is school clothes. These kids are so sweet, and ask for nothing....even more reason I am enjoying them. The funny thing is I don’t have much time left to think too much about my cancer. So who’s really getting blessed?
Anyway, prayers and warm hugs from PA
Laurie
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Hi Jill. Sorry you are joining us but there are some great ladies here. I’m struck by something you said about “pushing through”. So many of us do that but it’s important to give yourself little breaks during the day...for a rest or to read a book or close your eyes and breathe or watch the birds outside your window. I was working while on tTaxol and my dB would call me every day and ask if I was taking my 10 minute breaks every hour. It made me laugh because I never thought I had time to take breaks but I worked on it.....I then saw it was possible. It helped with the fatigue.
It sounds. like your onc has a good plan. Wishing you all the best.
Lita. Sending prayers and hugs. Z is right you are amazing and are teaching us all about enjoying every minute. Leapfrog hope things are going well. Hugs to all you dear women.
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Lita you always amaze me with how you deal with things- humor and great strength A winnng combo indeed!
I just wanted to share good news for a change. My TMs went from 838 to 676 I’m so happy things seem to finally being going in the right direction. Today I had the Y90 for my liver mets. All went well and I’m ferling good just tired!
Wishiing all my bc sisters a wonderful weekend
Babs
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Babs, Great drop in TMs. WOOHOO!
Lynne
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Bobs, happy about the good news.
Lita, I hope you have more time than the doctors are guessing. Gentle hugs!
Prayers for healing for all of us
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Wanted to let this group know that JFV (Joan) passed away Wednesday.
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