Bone Mets Thread
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I've had lots of rads and I did vomit afterward once....a lot. Now I always take an anti nausea when I radiate. Ask your doc.
Weird that it's the knee..minwas my spine, which makes more sense for nausea.
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Bigbhome, I am happy and relieved to hear the result of this morning's vote. It is good that so many people turned out to voice their disapproval. Now you can continue to enjoy your piece of paradise. Is your son in the path of the hurricane? Will he need to evacuate or is he in a safe area? I am looking forward to your visit to NH.
Hugs and prayers from, Lynne
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Bighome-I can't wait to see you. We will definitely make a date. I am leaving the 13th for a 2 week vacation to Mexico (our 35th anniversary is the 22nd). I will be around the beginning of October for sure. I haven't been leaf peeping in years (well besides the trees around here). They are beautiful in the White Mountains of NH. Glad to hear your hubby is recuperating well!
Chef-Glad to see you are feeling better lowering the pain meds. Sorry about the vomiting with the last rad. I never vomited with my 6 weeks of radiation (on the breast), 13 years ago, and the 2 weeks on my spine, 6 years ago. I had my Doxil and Zometa at the same time. I only was on Doxil for 3 months (and I only have Zometa, once every 3 months, after having it once of month for 2 years), and only had both one time. The Doxil didn't work at all for me. Good luck! Hugs!
Everyone in Florence's path, please be safe!
Lynne
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Hello everyone!
I feel horrible for posting here as I know it is only for those battling stage 4 cancer, its just I don't get very many (if any) responses on the "family and caregiver" thread. Its been a while since I have posted, but things are starting to get rough and I just need an ounce of hope. My mom was diagnosed with extensive bone mets in July of 2016. She was on ibrance for a while but stopped that because her counts were too low, and she has been on other bone strengthening treatments but has also stopped those because she does not like how they make her feel. There are too many mets to count to this day. I always had faith that since the cancer wasn't in any of her vital organs, she would live for a long time but I have lost all hope now. I have lost hope in treatments, and pretty much everything. My dad called me a couple days ago saying that a couple of her bones (not major) have broken and the cancer is continuing to grow, and that I should start visiting her every couple weeks. I have been bawling my eyes out ever since and I just want to feel a little bit of hope. I am a believer in God and I know nothing is impossible with him, but it is so hard to think that my mom will be here for a lot longer. I am only 21 years old and all I have been imagining is picking out wedding dresses and my mom not being there, giving birth to my first child and not having her in the delivery room, and just all of those things and I can't help but tear up. Would any of you be willing to give me some advice or just a few words of hope? Is anyone in a similar situation with my mom? Again, I am deeply sorry for posting on here I just feel like I have no where else to go and no one else can provide me words of hope like this website because I want to hear it from those who are battling this disease as well. Thank you and much love to all of you! I will be praying for all of you
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dear Cassidy,
when I was first diagnosed and placed on letrazole a drug known to cause osteoporosis, like your mother I chose to not be treated with bone strengthening drugs because of the treat of ONJ. I thought the drug would damage my health. At at time I was strong and had no symptoms.
After two years on letrazole, I end with two collapsed vertebras, and I became suddley too weak to care care of myself. I could hardly walk as I was in a lot of pain. I thought I was going to die.
I changed hospitals and decided to trust my new MO. To make a long story short, between a series of radiation to reduce the damage to the bones and khyphoplasty to repair the collapsed vertebras, getting a bone strengthening drug, and a change in TX I experienced a complete recovery, in the sense that I can at least take care of myself and I'm no longer in terrible pain.
I hope that your mom can get over her fears and get all the help available to her before it's too late, but whatever she decides, I wish her, you and your family onlythe best outcome.
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CassidyAdams4, I'm sorry you're so scared and worried.
1. Has your mother been on another treatment or treatments after the Ibrance was stopped?
2. Has she had bone scans, CT scans, and/or MRI's?
3. How often does she have blood work, and what are the recent results?
4. Probably most relevant, what does her oncologist say about her condition?
Just speaking for myself, I had a compression fracture to a vertebra due to bone metastasis. So far, I have not had anything done to it because it doesn't bother me very much but several people here have had procedures to fix that kind of break. I do get an Xgeva injection every month for my bones. I have read of others here who had breaks in other bones too but there was a way to repair or stabilize the problem. Let us know more about her medical treatments and condition if you can and I'm sure others here will have more information for you.
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Cassidy, You have no reason to apologize for posting here. We have had several concerned caregivers/relatives who post out of concern for their loved ones. If you need information, this is the place to come. Like Muddling, I am interested in hearing about what treatments your mother has had and what additional treatments have been recommended. Many people here, including me, have extensive bone mets and continue to do well in treatment for many years. Some of us also have mets in organs. It sounds like your mom has HR+ HER2- MBC. There are many different treatment options available, but, of course, she has to be willing to take them. I have had MBC for three years and am on my third line of treatment. Next week I will have scans to find out if my current treatment is working. If it isn't, I will move on to one of the many options still available to me. I have some additional questions for you.
1. Do you think your mom is experiencing depression? This is a very common occurrence with people who have MBC. Maybe an antidepressant would help her cope.
2. Has your mother been looking at the statistics on the web? Google is not her friend, and the information out there is scary. There are too many outdated statistics and inaccurate information posted. Many of us live for many years. As some on here have said, we do not have an expiration date stamped on our feet.
3. Is your mom's oncologist optimistic? If not, encourage her to get a second opinion.
4. You said that your mom didn'tlike the way some of the treatments made her feel. Did she report the side effects to her doctor? Many common SEs can be controlled by medication or by a dose reduction.
5. What did your mom take with Ibrance? Leterozole? Has she had Faslodex?
Perhaps you should visit your mom and accompany her to her doctor's appointment. It might also help to have a heart-to-heart talk with her so she knows how you feel. I can tell you that living with untreated MBC is exhausting, and untreated bone mets are painful. That can cloud your mom's mind and make it difficult for her to see any possibility of relief in sight. I hope she will re-enter treatment.
Please continue to post here so you can get the support you need. I am praying for you and your mother.
Hugs and prayers from, Lynne
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Cassidy,
So sorry about your mom. When I was first Dx'd in Spring 2016, I had FOUR compression fractures in my spine, THREE in my rib cage, bone mets in my pelvic bones, illiac bones, hips, thighs, bone marrow, etc. I also had tumors in my liver, kidneys, pancreas, lesions on my uterus, and abdominal wall and last year, they Dx'd 20+ tumors in my brain. Despite this devastating Dx, I'm still here and can still see, walk, and speak in coherent sentences.
They did radiation and put me on Zometa to strengthen my bone, and I'm on my 3rd line of chemo Tx.
There IS HOPE for your mom. I can't add anything else to what 50's girl and others have already said. They have made some very good points.
Has your mom gone to a palliative care dr yet? They can really help her with side effects. I still have a lot of bone pain, and I have horrible, explosive diarrhea from the chemo, but I'm managing it with the meds my palliative care dr has Rx'd. I took a walk yesterday, and went to Bible study this afternoon. Yes, I'm a lot slower now, but that's okay. My family and I are going on vacation to Arizona in a couple of weeks. I went to Yosemite (before the horrible fires) earlier in the summer. I think your mom still has lots of time, as long as her symptoms can be managed and she gets back on a decent Tx.
My mom passed from soft tissue sarcoma in the 70's. I was only a teenager in high school, so I KNOW what you are going thru. My mom didn't get to see me graduate from high school or college or graduate school. She wasn't at my wedding. She never held her granddaughter. They didn't have the Tx options they have today. You need to get a second opinion, and have a heart-to-heart with your mom. It kind of sounds like she's depressed (understandable) ready to throw in the proverbial towel. Bone mets won't usually take a person out, but depression/anxiety and not doing anything won't help the situation.
Forgive me for being "tough" here. I'm sure others will chime in, too.
I will keep you both in my prayers,
L
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This back pain continues to constant and almost unbearable. I don’t know what to do. I cannot spend my life lying down, but that’s the only way the pain subsides to a tolerable level.
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Shelia— you might want to consult with a palliative care doctor about your pain. I wear a fentanyl patch that gets replaced every 3 days. Contrary to oxicodone it has no side effects I have been able to detect and it's not addictive as I was able to get off it without any problems couple times when the pain went away.
Because I have two collapsed vertebras, which ache when I’ve been active, I use a magnesium oil spray that relaxes the muscles tightness. Immediate relief without SE.
It's an idea....I hope you ask for help and feel better soon
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I know that I'm not super active in this group, but I am thankful for the support and the community. I am sitting here getting my first ibrance shot, and zometa infusion and feeling sorry for myself. I feel bad that my young children have to have a broken mom. It helps knowing that there are other people going through the course and living a productive happy life. I just have to remember to keep my chin up. I hope you all do the same. Nobody is promised tomorrow.
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+1 on the fentanyl patch, no one should have to live in pain Sheila. I was using the patch for 8 months, and like Miaomix said I didn't notice any side effects (didn't fog my brain the way morphine does) and it was easy to quit when I no longer needed it.
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I’m already on a 50mcg fentanyl patch, and I take oxycodone 15-30 mg every 4-6 hours. How much fentanyl were y’all on that gave relief
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Is it aSE to your meds or the cancer I had horrible pain but radiation to the tumors in sacrum stopped that pain. Mine is due to meds now.
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I'm only on 12.5 mcg patch which is just enough
I feel the pain but doesn't stop me from doing what I have to do.
... as JoE suggested you might need to look into the radiations
I've been on xeloda for a few months and just this week I've started feeling extremely fatigued and more overall pains which I'm sure is caused by X. But my MO just told me I have to live with the fatigue.
As far at the pain is concerned, I will rest more and take more taxis to get around as I would prefer to not increase my pain meds
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Sheila I see your concern, that is a pretty high dose to still be in so much pain. How long have you been on it? I have read that people can build tolerance to fentanyl and need increasing doses over time to achieve same results, have you been on it long enough to need a dosage increase? Or I wonder if changing the oxycodone to something else might give you better relief? It took a fair bit of experimenting before we found the right drug combination to handle my 9-10 pain level. What worked for me was adding 25mcg fentanyl to the morphine sulfate I was taking every 4 hours (and something else for breakthrough pain that I don't remember). The fentanyl plus morphine sulfate was my magic combination. When it was time for me to start weaning off morphine we did discuss upping fentanyl dosage, but by then my bones had healed enough that I stayed with the 25mcg until I no longer needed it.
Hugs, hope you find something that works for you.
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Hello beauties! Cassidy- you are welcomed here with open loving arms always! I hope you’ve gotten the support you were needing, I ditto what everyone else has said. My daughter is almost 21 and we have these same fears. It’s not fair at all but we try to remain hopeful. None of us know we are going to die until we do? I for one am not at the moment dying so I try my best to live now. I also know that I’ve been really bad sick since diagnosis for varying reasons, in those times it is very hard to have hope, even for my family watching. Being sick sucks! It definitely effects your mindset, but with time, tlc and proper medical attention I made it thru. Ups and downs are the new norm. I know that the good doctors will do their very best to help us however they can to not go thru any undo suffering. No need to be strong or brave or tough putting up with pain, nausea, ect. No! Ask for help and don’t give up until you find the right help. Hopefully your mom was having a temporary low as I know I’ve had:/ let us know how things are going if you can. The women here are the smartest, strongest, most loving women ever:)
To those who are dealing with pain, all I can say is keep complaining to your drs! For whatever reason it took mine several weeks of complaining before they finally sent me to radiation and it’s like a miracle the pain relief a little radiation did for me. I guess in the beginning it was because the pain was so widespread but when I could pinpoint some areas they could focus on is when rads came into the pic. Also chemo provides pain relief in that it kills the cancer causing the pain. Then there’s all the pain meds, so yeah maybe you will lay around doing nothing but hopefully it will be temporary, I spent way more time than I wanted to laying in my bed, maybe 2 months? But now I’m so much better:) I hope and pray you all can get relief ASAP and until then just rest and think of rest as banking up a much needed resource;)
Ok I couldn’t get thru without asking for help from y’all, so I start monthly Doxil next week, any ideas on what I can expect?0 -
Hello Ladies - I am the WORST at posting, though I read every day. It is just hard to find the time to sit down and post. I am still working full time and am a single mom to three kids under the age of 16 (ie no drivers!), so I am on the go just about always. When I last posted, Xeloda had failed and I was screening for a clinical trial. After an annoyingly long screening process, it turned out that I was not a candidate -- while I have "innumberable" bone mets in pretty much every bone in my body, none of them are really big enough to be "measurable" as required by the trial.
So, I started on Navelbine at the beginning of August. I also got a port placed. I never had one when I did AC-T when I was originally diagnosed as Stage III, but the Navelbine can apparently be very hard on veins, so a port now makes sense. I am still getting used to it, but it is good not to be poked so many times. I have completed 2 rounds of 2 weeks on, one week off. When I go in this week, we will schedule a PET scan (last one was end of June). Navelbine has not been too bad -- I have had fatigue, a little nausea and some diarrhea, some hair thinning and a little neuropathy. Have meds for the nausea and diarrhea, so mostly just very tired and achey in the 2 days after chemo. This has been very hard with my work schedule, though. I have kind of a big deal going on at work this week, for example, and I am trying to get everything done in the first three days as I will be out for chemo on Thursday and would really prefer not to come in on Friday because I will be tired (I have worked at home on Fridays so far since starting the chemo). Has also been hard with kids' schedules. There are three of them going three different ways - this past weekend, my parents took one, my soon-to-be-ex took one and I took one. I had an all -day volleyball tournament -- not too far from home, so not a long drive, but sitting in bleachers for 6 hours was exhausting. I slept a ton on Saturday night and napped Sunday, so did not get all my laundry/house chores done. Oh, well.
I have some wonderful friends who have come with me to my treatments and brought us some meals the weekends following chemo treatments, and that has been a great help. Also had a quick weekend trip with my two girls (ages 10 and 12) over Labor Day weekend (previous week was my "off" week) to Portland Maine. The weather was beautiful and the food delicious. I have been trying to travel as much as possible while I am able to do. I am blessed to have been able to take these trips and hope that they will remember our experiences together.
I know I shouldn't do this to myself, but I am a little anxious about whether or not the Navelbine is working. My tumor markers are very reliable. They were up to 798 before I started the Navelbine. With my first two treatments since Stage IV diagnosis (Ibrance/Faslodex and Xeloda), I saw an immediate and marked drop in tumor markers (like several hundred points) after the first few rounds of treatment. After two rounds of the Navelbine, they dropped, but only to 753. I know it's a drop, but it's not much of one, so it makes me nervous. But only time will tell, hopefully Navelbine just needs a little more time to get going.
So, I am plugging along, thinking of you all often -- L
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Lemon, my MO, for one, does NOT rely on tumor markers.
Anything can set them off...inflammation, etc. My MO relies on SCANS so she can actually see the progression (size, shape) of the tumors.
Hope that eases some anxiety for you,
L
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CassidyAdams - I hope reading the previous postings has given you some hope for your mom. Like others here, I had EXTENSIVE bone mets when I was first diagnosed. They were everywhere. I had 3 weeks of inpatient radiation and was in a back brace for 2 months that I couldn't take off - even to sleep. I was in incredible pain... so much of it is a blur. I had two kyphoplasty's to repair collapsed vertebrae. I had a broken hip that had to heal on it's on because obviously you can't cast a hip. Anyway, all of that was six years ago.... I now get treatments (Herceptin) once a month and Xgeva for my bones once a quarter. ( I got that once every six weeks for a long time and recently switched to once a quarter) I've been lucky and have had no evidence of disease for a long time. I hike, run half marathons, ski, etc.... I have two boys that are your age and I do everything I can to keep up with them! Pain is SO debilitating - both mentally and physically... and it sounds like perhaps that is what is happening to your mom. Some of the other ladies asked such good questions and had great suggestions. I hope you have found some helpful information here that you can take back to both your mom and dad. Please keep us all posted. Hugs to you and your family.
XO
Andi
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Bigbhome...thank you. I won't get lost again.
Cassidy...I can't add anything to what the others are saying but I can echo them by saying you have every right to post on this board and you're very welcome. If we can do anything at all to help you we will. The others have made every point that I was going to make so I won't repeat them except that I'm sure something can be done for your mother if she's open to help. Perhaps you could gently suggest that she allows you to accompany her on a visit to her oncologist and lets you ask a few questions? It does sound as though it's all got a bit much for her and she's despairing but, as you would have read, others here are in a worse position and are still smiling so it can be done but we all need some help at times. I have mets in every bone in my body from the femur up. Ibrance and Letrozole and keeping them stable. Xgeva (or Denosumab) injections are making my bones stronger. We just can't afford to give up. Perhaps you could gently encourage her to be positive by telling her she has a lot to look forward to as you become a fully fledged adult.
Lemondrop...hardly any MOs, in fact none that I know of, use tumour markers as a sign of progression. If my MO used mine as a form of diagnosis I'd be changing treatments every two months! They rely on scans, as others have said. Don't worry about TMs. It's tempting, I know, but they're not significant. Mine is also high.
Sheila...I'm on 50mcg Fentanyl patches plus Palexia which is a sustained release form of Tramadol. By doing that I've been able to drop Tramadol PRN. I was taking 200mgm per day and I thought that was too much. Oxycodone does absolutely nothing for me except to make me drift off with the fairies and be incapable of coherent speech! It doesn't touch the pain but one Panadol (I think it's the same as Tylenol in the US but check) helps if I have breakthrough pain. The reason is it works on different pain receptors. That's why doctors like to attack pain using more than one drug. It seems to be trial and error. I still have pain and have to lie down for a while in the afternoon with a heat pad under my back but I don't want to take any more drugs than I do now. I don't think I've been very helpful. Sorry I don't have more to offer. My only suggestion is that a lot of people find Oxycodone not to be a great pain killer.
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Sheila - my oncology nurses have always recommended paracetamol based meds for bone pain - I get two tablets with every Zometa IV. I've just started on 25mgm Fentanyl patches for hip & leg pain that had me in tears and limping. I topped up with paracetamol for the first 24 hours of wearing the patch and I could feel it helped.
A question to those who have been on fentanyl and come off it - how do you know you're pain-free enough to stop them? Or is it trial & error? I'm on day 3 of my second patch now & don't feel any of the pain I had last week.
~K.
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chef I did have to pull over after one of my spine radiation treatments (I had 2) it was violent and just terrible as I was on a main h
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Lemondrop u are amazing, I have a hubby and 1 teenage son of 15 and work 3 part time dsys and most afternoons I have to go to bed for 2-3 hours to sleep/ rest which I find annoying. To be onyour own work full time and run 3 kids around during chemo is an amazing effort ❤️
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Lita and Leapfrog - My MO relies on scans, not tumor markers as well. I will have a scan in a few weeks. I am aware that tumor markers are not accurate for many people, however, my tumor markers have always been extremely accurate -- rising and falling lockstep with cancer activity/progression. I know that is not often the case, but it has been for me. My markers are not always high - they have been almost back to normal at points when scans showed very little cancer activity, and they have been high when scans have showed all kinds of progression, so the fact that they are remaining high right now still causes me stress, as I wish I knew that my new treatment is actually working! Oh well - all I can do is wait and try to put it out of my mind as much as possible. Hope everyone has a good day! L
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karz72 glad to hear you are getting relief with the fentanyl patch. What I liked best about it is there's no up and down like there is with oral pain meds, It keeps thing on an even keel.
As to how you know when to quit them - for me it was a scan that showed substantial bone healing throughout my skeleton from treatment, and then a couple months later my MO commented that he could tell by my posture and the way I carried myself. First we slowly stepped down the morphine over two months, and then stepped down the patch over the next couple weeks. The step down process was to minimize withdrawal symptoms but if there was any sign that the pain was still bad along the way we would know where to set the new level for pain meds. The fentanyl was very easy to quit, the morphine was a bit tougher.
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Hi, Ladies. Just had a question about tumor markers. Just had scans again last week and it appears everything is stable (I have mets in just about every bone). But my markers are creeping up. I am on Kisqali and Femera for 11 months now. When I started they were in the 700's. Got down to 150 or so and started gradually going up over the last 3 months. They are now at 230 or so. Onc says we will check again next month and may have to talk about changing meds. Do you think this is cause to jump into a med change? I have very few SE's and no symptoms on this combo and would like to stay on each one as long as possible. What has been your experience?
Kathy
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hi Kathy,
The results from scans usually take precedence over TMs that are considered unreliable. I would personally choose to remain on the current TX for as long as I could could, as changing TX doesn't always work as expected anyway and you could be quickly burn through options. Best wishes for a continued lack of progression.
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delzy, thanks for the info, sorry it happened to you too, especially on a highway! Although I fear that my neighbors saw me and it’s a little embarrassing, atleast with a bald head I look sick and not just drunk or something lol it’s so nice not to be alone in this too:
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Kathy-My oncologist always goes by my every 3 month scans. A few months ago, my tumor markers were jumping 50 points a week. We decided to do the scans a month early. I had new tumors in my lungs, so we changed from Taxotere (I was on it over a year) to CMF. i've had 2 doses, and am do for the next one next week.
Good luck! Hugs!
Lynne
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