Bone Mets Thread
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I haven't been on in a few days and had a lot of catching up to do!
Lynne, thank you for the update on Aurora. She posted a lot when I first joined, so I remember her well. Count me in as another one who is keeping her in my thoughts.
Swess, what a beautiful poem. It touched my heart and brought tears to my eyes. Re: lymph nodes, I had three positive pre-neoadjuvant chemo and they were all cleared, but had another positive one removed at surgery. Now, I'm on AIs and Zometa, and so far, scans show those remaining are still clear and no new positives. I'm assuming the AIs are continuing to keep them clear.
Leapfrog, Wonderful news! Congratulations.
Micmel, congratulations on your daughter's engagement. When's the wedding?
All my best to the rest!
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Leapfrog, great news!!!!
Ok ladies i need some advice. This evening as I was sitting down in my recliner, I got a sharp pain in my left lower thigh. Not the knee. I always tuck that leg under me when I sit, so my weight goes on it. I didn’t think much of it until it happened again. Do you think I should be concerned? Does that broken leg thing happen very often with XGeva and those meds? Does anybody know anyone who has had that? I do NOT want to go to the ER because of all the flu. It’s not hurting just sitting but kind of feels funny (which honestly could be in my head)!!
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doesn’t really hurt walking on it but now is hurting right above my knee
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amazing poem. We don't want our daughters to suffer. Her words are so special x
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Gracie, if the pain isn't horrible and there’s no, swelling, heat, etc.,I just email my MO and give it a day or two. I find that I tend to think the worst before reminding myself that the simplest explanation is usually correct.
I had a pain in my left thumb when I was diagnosed (left side bc) and thought it might be related. The onc nurse said in all her years, she had never seen thumb cancer, lol. I realized later that it was a stain from how I held the steering wheel. Tough to catch a break mentally
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Mae, isn’t it amazing where our mind goes? A year and a half ago I would not have thought anything of that!!! It’s better so I think I just put some strain on my knee!
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Gracie -
Whatever is going on, I hope you feel better and have a great weekend.
Same goes for all of you.
>Z<
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Thanks Z! Hope you are feeling better too. How is your fatigue level? Hope it’s better, that seems to affect so much!!
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Poetry is such an amazing way to express feelings of joy, hope,etc., and Swess, how beautiful your daughter is to honor you in that heartfelt way. Simply amazingly lovely words.
Leapfrog, I have a scan coming up, and I am hoping to hear the words ‘stable’. I am glad you are happy with those results. I will celebrate with you if I get similar news!
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Gracie - thanks for asking. I am recovering gradually after getting socked in the stomach after my first Zometa infusion last Friday. I get a 2 mile walk in, I get to the spa for an hour or more of yoga, I get my errands done and kinda stay on top of things for my family (2 girls going in 18 directions). I get it done, but no extra energy for sure.
One problem is that I strained my chest muscles coughing during one or another of the 5 viral infections that have swept through my home. Scans confirmed it's not new mets and Ibuprofen controlled the pain but the pain would not improve. This week I've stopped taking Ibuprofen, which means more pain, but things are improving slowly. I think it was one of those things where I need the pain to keep me from doing the movement that irritate my rib cage.
There is an interesting article in the NYT about how they manage pain in Germany. Much less likely to use pain killers of any type. I often feel that cancer patients don't get enough pain management but there is also a place for sitting with the pain, which is the German way. With this chronic rib cage pain thing, I am definitely doing better sitting with the pain.
>Z<
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Hope that lets up soon Z, it sounds like it would be frustrating. Think of you often
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Hi, right now just watching and not sure how to contribute to this topic. I have been diagnosed at the beginning of January and just trying to sort my feelings and have the words for them, but just wanted to pop in to let all of you know how appreciative I'm of all the information and discussion here, it's helping me a lot, thanks!!
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Hi Vilma,
I’m in Victoria so not far away. You will find lots of support and information here. While we all wish you didn’t need to be here, don’t hesitate to reach out. These ladies will help in innumerable ways.
You might want to update your profile to provide info on your diagnosis and treatments. It’s very helpful when folks are trying to provide advice.
Hugs. Pat.
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Z: Being German myself, I can tell you that the article you quoted it basically correct. People here prefer to rather take a rest instead of overdoing when using pain killers. And we like to refer to herbals and what we called home-made medicine (e.g. cough medicine made from onions or ginger or lowering fever with cold wraps), because this will help in many cases equally well. We say that a cold will last 7 days with medicine and 1 week without. The difference is that while staying at home one does not pass the infection to too many other persons. However, we do have adequate pain management when it comes to severe pain, e.g. correlated to cancer. We have docs specialized in this area and nobody needs to suffer unneccessarily. We basically have the same options for pain killers that you have in the US.
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Hi Sadiesserva, thank you! so far the only things that I know about my diagnosis are in my profile, I'm having my first ct scan next Tuesday so I'll get more info, hopefully mets didn't go to other places, in the bone scan they saw three spots in my bones but I don;t know size or anything else. I was diagnosed with IIIa IDC in 2/2010 until this year stage VI
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Hi Vilma! This is a great group with some very knowledgeable women. I’m sorry you are in our group, but it’s nice to meet you. I was diagnosed in Aug 2016 after almost ten years in remission
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Welcome, Vilma...we wish that you didn't have to be here, but we're ready to help and support however needed! Good luck with your scans on Tuesday, and let us know how you're doing-
Hugs-
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Thank you all, I will update as soon as I have my scan results
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Hi Vilma. You just need to make your diagnosis and treatment public in your profile. One of the quirks of this system is that each time you add info you have to manually make it public.
Sending positive thoughts that the scan comes back with very limited mets.
Pat
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Hey,
Popping in it's been a long week, but productive. I started my 5 radiation treatments this week. Rads to my lower back and one of my left ribs. I'm only two treatments in and the pain has decreased to almost non existent. That's some happiness in the rough battle we are all facing each day. For those newer to the thread. I'm having radiation to reduce pain. It will not cure my disease. But, I'm finding the radiation treatment to significantly improve my quality of life.
I also had a bone biopsy done this week and I'm waiting on the pathology to come back from that. I'm not sure if many have had bone biopsies on here. I don't see it mentioned often. It was interesting. Didn't hurt anywhere near as bad as I thought it would. I've been told that my oncology team wants to confirm that my significant amount of bone Mets is actually bone Mets. Evidently, for a fairly small tumor and type of breast cancer have it's uncommon to have so many bone mets du novo (right out the gate). I don't think much changes either way. I'm ready rare anyway.
I also got my genetics testing back this week. Tested 80 genes and nothing. Totally negative. Every one of my doctors was a bit surprised. Large history of cancer in my family. None similar to me. The doctors say it’s still possible that it’s genetics just not one they have found or test yet. Only 31 and I don’t think I willever know why or how this happened to me.
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Vilma - you need to go to settings and make you diagnosis and treatment profile public or we don't see it. see "settings" in the menu on the left.
>Z<
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Raisan, glad the rads are easing your pain. I agree the bone biopsy wasn’t bad, I made the mistake of googling the procedure and really freaked myself out. The biopsy was positive, which was my only met at the time, so stage iv de novo here too. Like you I had genetic testing as well, it came back negative despite my mother and maternal aunt both having a bc diagnosis in recent years. The geneticist said the risk is probably in a combo of genes they don’t have a test for but to have all female relatives start mammo’s at 31.
It’s a lot to deal with but this is a great place.
Hi everyone else, happy Sunday
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Thanks, didn't realize it was private
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Swess- that's so beautiful and heartfelt!! Crying in buckets especially when I think of my young kids and what MBC means to them
good luck to you .. praying you live many more years enjoying your daughter and be cancer free 
Raisin Angels- I hope you continue to heal and find a treatment that eases your pain .. I totally get the confusion and agony associated with an MBC diagnosis from the get go especially at a young age .. I was 37 and pregnant when I found out .. despite reaching a practicaly immobile state over the course of 7 months of pregnancy and enduring intolerable pain, no one ever suspected cancer or mets to almost every bone in my body or fractures to to leg/ shoulder and back! Going through all this pain without any pain meds whatsoever because of the pregnancy, I never imagined this will be my future..I always hoped once baby is out I’ll be ok again but I’m in an endless game with the mets. I keep finding those young women who go through the same ordeal ... something is not right!!
I pray from the bottom of my heart we all find cure!!
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Hi Vilma.....just echoing the others that you're in good hands with the ladies on this thread. There's a lot of knowledge and support here, even though we'd all love it if we hadn't met this way.
NettaGER and Z.....I've had a wake up call about pain. I've been very slow to understand that rest is so important so Netta, your advice has fallen into a receptive mind. My oncologist and trial nurse have been telling me again and again to rest, my friends keep telling me not to overdo it, my husband and son ditto but I'm so stubborn and so resistant about it that I continued to do as much as I could. In my defence, I had to lie in bed for almost three years before, during and after diagnosis, before the treatment and pain meds kicked in, so I just wanted to grab at life and enjoy everything ~ not big things, just pottering about with my plants, going for tiny walks and keeping my apartment clean ~ but obviously it was too much because fatigue from Ibrance was like a brick wall this cycle and I couldn't do anything, during which time I discovered that my pain decreased enormously! So, at last the penny has dropped and I've realised that the pain is telling me the bones still have micro fractures, which I'm not allowing to heal. So a big thank you.
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Hi all, I've decided to change my screen name; just an FYI - was bjsmiller.
Raisan, I think most just don't post biopsies in their signature. I had a bone biopsy to my left illium and it wasn't too bad either, although I hated the drugs they gave me because I felt groggy for hours. Not like the propofol I had for my port; I just woke up from a good sleep.
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Leapfrog - I have a very hard time reconciling resting with the feeling the clock is ticking. But lately I consciously do less and I am doing better. It seems like all I do is exercise and rest these days.
>Z<
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Posting the whole piece from the NYT because it is both funny and relevant and I am not sure everyone has access. Again, my general position is that cancer patients need MORE pain killers not less. However, this is still an important perspective for the type of pain associated with healing.
After Surgery in Germany, I Wanted Vicodin, Not Herbal Tea
MUNICH — I recently had a hysterectomy here in Munich, where we moved from California four years ago for my husband's job. Even though his job ended a year ago, we decided to stay while he tries to start a business. Thanks to the German health care system, our insurance remained in force. This, however, is not a story about the benefits of universal health care.
Thanks to modern medicine, my hysterectomy was performed laparoscopically, without an overnight hospital stay. My only concern about this early release was pain management. The fibroids that necessitated the surgery were particularly large and painful, and the procedure would be more complicated.
I brought up the subject of painkillers with my gynecologist weeks before my surgery. She said that I would be given ibuprofen. "Is that it?" I asked. "That's what I take if I have a headache. The removal of an organ certainly deserves more."
"That's all you will need," she said, with the body confidence that comes from a lifetime of skiing in crisp, Alpine air.
I decided to pursue the topic with the surgeon.
He said the same thing. He was sure that the removal of my uterus would not require narcotics afterward. I didn't want him to think I was a drug addict, but I wanted a prescription for something that would knock me out for the first few nights, and maybe half the day.
With mounting panic, I decided to speak to the anesthesiologist, my last resort.
This time, I used a different tactic. I told him how appalled I had been when my teenager was given 30 Vicodin pills after she had her wisdom teeth removed in the United States. "I am not looking for that," I said, "but I am concerned about pain management. I won't be able to sleep. I know I can have ibuprofen, but can I have two or three pills with codeine for the first few nights? Let me remind you that I am getting an entire organ removed."
The anesthesiologist explained that during surgery and recovery I would be given strong painkillers, but once I got home the pain would not require narcotics. To paraphrase him, he said: "Pain is a part of life. We cannot eliminate it nor do we want to. The pain will guide you. You will know when to rest more; you will know when you are healing. If I give you Vicodin, you will no longer feel the pain, yes, but you will no longer know what your body is telling you. You might overexert yourself because you are no longer feeling the pain signals. All you need is rest. And please be careful with ibuprofen. It's not good for your kidneys. Only take it if you must. Your body will heal itself with rest."
I didn't mention that I use ibuprofen like candy. Why else do they come in such jumbo sizes at American warehouse stores? Instead, I thought about his poetic explanation of pain as my guide, although his mention of "just resting" was disturbing. What exactly is resting?
I know how to sleep but resting is an in-between space I do not inhabit. It's like an ambiguous place that can be reached only by walking into a magic closet and emerging on the other side to find a dense forest and a talking lion, a lion who can guide me toward the owl who supplies the forest with pain pills.
"I do have another question," I said. "Stool softeners — certainly, you prescribe those? That's pretty standard with anesthesia throughout the modern world, I believe."
"You won't need those," he answered in his calm voice. "Your body will function just fine. Just give it a day or two. Drink a cup of coffee, slowly. And whatever you do, do not get it in a to-go cup. You must sit in one place and enjoy this cup, slowly."
His gentle suggestion to trust my body almost brought me to tears. It reminded me of the poster in my doctor's waiting room, the one informing us that herbal tea is the first remedy to try when we have a cold. The first remedy I try is the decongestants I bring with me from the United States. I can't find those in Germany, nor can I find the children's cough medicine that makes my child drowsy. I also import that.
Come to think of it, I bring a lot of medicine with me from the United States, all over the counter, all intended to take away discomfort. The German doctors were telling me that being uncomfortable is O.K.
My first night home after surgery, I didn't sleep well because of the pain from the carbon dioxide pumped into my body for the laparoscopy. Had I had something to knock me out, I would have taken it.
In the morning, my husband propped me up in bed and brought me a pot of tea. I was tired and uncomfortable, and I was bored. An entire day lay ahead of me. I was dreading it.
I took two ibuprofens that first day. In hindsight, I didn't need them, but I felt like I should take something. What I really needed was patience pills, and a few distractions. The hardest part of my recovery was lingering in bed, or on the sofa, feeling the discomfort and boredom as time ticked by slowly. I didn't feel like reading or doing much of anything. I watched a few movies and many episodes of "Antiques Roadshow."
Every day, my body felt a little better. I drank mint tea. I drank fennel tea. I drank homemade chai with ginger, cardamom and pepper. I drank coffee slowly, enjoying every sip. I lingered in that in-between space.
After a week, I took the tram to the doctor's office to have my stitches removed. My doctor, with her usual cup of chamomile tea in hand, remarked on my progress. "I rested," I told her. Normally, I would have said, "I did nothing," but I didn't say that. I had been healing, and that's something.
I did say that this story is not about the benefits of universal health care, but for the sake of accuracy, let me add that this hysterectomy was not without cost. After my surgery, I had to pay $25 for the taxi ride home.
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Just one last remark from me on this article: the writer could have handed in the taxi bill to the German health insurance and get it refunded as well, because she certainly qualified for a paid ride home after the surgery. German health system ;-) .
On the other hand I would love to be in the US and be able to perticipate on one of the many great clinical studies available. There are much less studies in Germany. Our country might be too small and studies under the supervision of the FDA are probably more widely accepted (although the European EMA standard is quite the same).
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Zarovka, I loved the story, and even if I also one to pop ibuprofen when needed I'm thankful for the pain in my back that let me know that something was wrong hopefully before the damage was too extensive. Pain does force us to listen to but we don;t want hear isn't it? In that note I'm also thankful for the Femara that it seems to be doing its job since I have almost no pain and hardly taking any pain medication at this moment
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