Bone Mets Thread
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Just popping in quickly to say hi. Lynne - don't apologise and I'm glad your husband has found a good doc who was able to answer questions and allay your fears.
Christina - bugger @ real estate deal! I'm so sorry to hear. Hope your pain gets under control soon.
Deanna - sending "feel good" thoughts your way.
Hi Patty!
Myra - how are you doing?
Dune - miss you!
Chelle - sending good thoughts.
LindaE - want pictures!! Sounds adorable! I don't just like cats..love dogs too.
Sue - glad for your good news.
Lindalou - hope the rads are going well.
Annie - hope you feel better soon!
Jazz - hooray for good news.
Auroya - Glad you're home!
Momall - glad you're feeling better!
Amy - sending good thoughts your way.
Annie - hope you're feeling better every day.
Jobur - great to hear from you!
Kristen, Caryn, Marilyn, Dee, Wendy, Tracy, BarbaraA, Chris, Sue...and everyone I've missed...sending lots of hugs and good thoughts.
We are indeed in the house. Between business travel, work, and cat rescue, my DH is doing the hard yards at home. Hoping to get some unpacking done this weekend. Spent Sunday night feeding babies every two hours, but so worth it even though I'm tired as tired can be. Here's a pic of the wee babes...the biggest one is about 4" long. they are no in full time foster care and doing well!
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please help me.
Went to get faslodex and zometa today and nurse said my red blood counts are down to 6.6 and I need a transfusion. I had rads last July/August and surgery for a broken femur in Sept. I was transfused twice at that time. I was s,so vegan. My numbers had stabilized at 10.5 or 11. Onc wants to do pet scan and I'm scared to pieces. I don't know what he's looking for. My white blood counts are okay. I weigh 115 and eat very little red meat. Can someone ...anyone help me?
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Rachel hang tight there will be help on the way if I know these gals at all. Pet scans are good then we know what's actually going on. Deep breath the oncologist are always looking and that's good then if there is something it can be dealt with quickly. Your white counts are good that's a definite plus. I wish I knew more to help but the others do. We are all here for you , you aren't alone. Big hug
Wendy
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Terre I want them all OMG so cute! Love cats
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Rachel you really tugged at me with your cry for help. Many ladies here had transfusion, it's very scary. Maybe you could eat some meat. And hopefully you will get some more advice. When will you be able to have the PET/CT?
LindaE - so happy for you, they are so cute, truly wonderful I could see your smile thru the letters.
Lynne- Truly special of this doc to take the time and make things straight. When Dani was first diagnosed her very busy biggie surgeon would call me for a yr for sure after ea scan, that same day to let us know good news. He did not even want us to loose one night sleep. I understand you so well about not wanting to rattle the kids, they think about it anyway, but it would be even harder to hear your suffering, I go thru the same thing, we share a little, but I cannot let my guard down really because I know they follow my compass, so not even to my hubby, we would be ALL walking around like zombies. I do have hope. But I am terribly anxious. What can I do. I do try to do all the mundane things thru the day, I even keep up with my sisters, whom I am very fond of, but they don't know the situation here. They know something but they cannot fathom what we are going thru. Could not possibly bring myself to share yet. In this thread there is so much understanding and support and I am so glad that I am part of this group. BIG kisses to you.
Patty hi sweetie, how are you spending your days?
Dune how are you managing?
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Rachel, I'm sorry that I don't have much wisdom for you. I ate very vegetarian for many years until I was so anemic I needed to go back to eating meat which I have gone back to. Hopefully someone will have some insight for you.
Lynne, I hope there will be some answers for your DH.
From reading the last few posts, I can see I've missed some news. BBL, Cheers, Dee
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Rachel, why don't you simply ask your onc why he is asking for a PET scan at this time? If you haven't had one in several months, it may just be time to see how you're doing on Faslodex and Zometa. I don't think he's looking for anything out of the ordinary or ominous. Many women with mbc have scans as often every 3 or 4 months, although I don't personally favor doing them that often unless you have clear symptoms of progression, such as rising TMs or increased pain. But it's probably more common than not. Also, if he suspects the Faslodex is adversely affecting your rbc (see link below), he may want to consider a different med, but would want a complete picture of how you're doing on Faslodex, to weigh the benefits vs. risk.
http://www.rexall.ca/articles/view/1599/Faslodex (See Precautions section; Red Blood Cells)
I do think it's harder with mbc and our meds to keep our counts up on a vegan diet. I've reluctantly gone back to eating some beef for that reason, and I know others who have had to do the same.
Hang in there! It's good your onc is on top of things. Deanna
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Rachel, please ask your ONC what the plan is. What are they looking for? Your CBC (complete blood count) looks most specifically at white blood cells, red blood cells, hemoglobin, hematocrit, and platelets. It sounds like only your red cells and hemoglobin are low. Please ask for an explanation of your CBC. You can find a good explanation of the components of a CBC and what each does at the American Cancer Society and breastcancer.org. They aremost likely looking for the cause of your anemia: meds, diet, or disease or a combo. Even iron deficiency anemia related to diet and meds. The PET/CT can be for any reason including that you are just due for one.
I always ask my ONC or nurse practitioner to explain what my plan is after each visit or phone call. They all know to recount what happened during the visit, summarize any diagnostic test results (and give me copies of results), list my next appointments and any new tests ordered and why, and they always know to say "do you understand the plan?" I am a nurse practitioner and I typed out these questions for them so they know I'm not leaving until I have my answers. I keep a binder with all this stuff in it. And take it to every office visit.
I have regular transfusions due to bone marrow mets and I'm doing fine. I eat loads of green leafy veggies, meat, and take iron supplements and still need transfusions to keep me going.
Please know we are here to help. I'm not sure about your MBC particulars. Check out your profile and try to complete. This may help us know where you are with history and treatment.
Big hugs, and hopes your anxiety is relieved some. Call that ONC and get some answers, you deserve to know the plan.
Regards, Beth
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Rachel, I get a CT every three months (mine don't do PET) so as the other ladies have said, the proposed scan isn't necessarily a reason to panic. According to Dr. Google, anemia can be caused by a shortage of iron, folic acid, B12 and vitamin C. Vegans need to be very careful, as non-animal sources of some of these are a challenge. You don't need to eat meat, per se, but loading up on eggs with yolks, kale, beans and dairy, along with a good vitamin C supplement may help. There may be a medical reason for the anemia, but it may be dietary. Do your doctors know you're vegan? You could see if they have checked or can check these important levels in your blood and maybe get some help f4om a dietitian? You say you're 115? Did I miss your height?
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hello ladies Iwell I have scans this Thursday ,and yes of course the anxiety that comes along with it . my dr wants scans because my tms jumped from 207 to the 300s .have any of you had that happen that fast ?within a month.. of course I have had a lot going on I had all my teeth pulled a few months ago then I had a rod put in my right hip as my bones were so weak there they thought if I fell or something it would break that hip bome . so for preventive measure they put it in ....and that was about 3 months ago but its still really sore ,,,just womdering if anyone else has had this done . and they radiated it but didn't help the pain too much . in fact it seems like everything else is falling apart now .I have arthritis in my left knee and they put a shot of cortozone in it but not sure it will last long ,so that's why im really scared for my scans on Thursday . so ny information would help . sorry to be all about me when I know all of you have issues also ..thank you so much for listening to me . love to all chris
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millandra,
I am 5'3" my platelets are around 75, and white blood counts 5.5. I'm do frightened. Rachel
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Rachel, I echo what others have said above. I lost a lot of blood during femoral surgery and they waited a month to see how my body reacted to my red blood cells. I admit I was a little scared and had quite a bit of red meat (which I rarely do) and lentils. It eventually came back to normal levels otherwise I would have needed a transfusion. Does your Onc know you're vegan? It's an important element for them. I get regular scans every 3 to 4 months but mostly 3. When was your last scan?
Chris, I've been following your posts and indeed you went through so much lately. I can't comment on TMs but I can give my input on the femoral surgery. Mine was also preventative, it never hurt before surgery but have had a lot of recurring pain to femur. I had surgery in April 2014 and have had xrays taken many times because of the pain. CT scans cannot be used for femur because of artefacts from ortho material. All this to say, xrays always came back good, ortho material in place and met stable. In November, I just could not stand the pain anymore and have had 1 tx of rads to femur and what a relief. I had 5 tx of rads post-surgery about 1 month later which I was told was standard care to consolidate the bone. Do you have adequate pain meds? Good luck with scans.
Mommal - how is Dany? and how are you? I hope you can get a bit of time here and there to pamper yourself as well.
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in hospital getting transfusion and can't stop crying.
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Good afternoon ladies. I have been trying to keep up, but I have been focusing on myself trying to get all in order. Tomorrow is the spinal tap, neuron onc on Thursday and rad onc on Friday. Team mtg on Friday afternoon. We are scheduled for a cruise on Sunday and MO wants us to go. After the New year, my brother is insisting my DH and I come up to him to Dana Farber for a second opinion. This is where I need help with an MO.
AS FOR EVERYONE ELSE, PLEASE KNOW I AM ALWAYS THINKING ABOUT AND LOVING YOU.
So sorry I have been distant, but please know you are in my thoughts and I truly appreciate all your love and support. Myra.
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Myra, I'm so glad to hear from you. Focusing on yourself is the best thing you can do! Will be holding your hand in spirit at all your appts. I'm sure some US gals can give you input on Dana Farber. Do you feel well enough to go on your cruise? Sending you extra BIG hugs.
Rachel, I'm sorry you're in the hospital, but so glad you're getting the care you deserve. That was the best thing to do. Sending you BIG hugs as well.
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(((Rachel))) Is anyone with you? I hope so! I am going to stop and pray for you right now -- asking that your fear be replaced with comfort and peace that you are getting the care you need. I'm so sorry you're dealing with this, but I think you should feel much better after your transfusion. Big hugs to you!
Myra, I would strongly second your brother's advice. But as you know, I'm a huge fan of second opinions -- just because even the best docs don't all think alike, and it can be really helpful to talk to more than one or two, especially when facing a new situation or tx. If DF isn't particularly convenient for you, there are other NCI-designated cancer centers closer to where you are. Plus, as you may know, you can usually take any recommendations back home for tx locally. But, yes, please get a second opinion before doing anything invasive! In the meantime, enjoy that cruise!
Chris, it sounds like you've been through A LOT! I also have a rod in my femur -- to repair a fracture. I refused radiation because I wasn't in pain several weeks after my surgery. But for me, now, cold and wet weather can make me more aware of the rod than I am when it's warm and dry. I also take curcumin, which I think helps to ward off arthritis pain, and probably general discomfort in that area as well, due to lowering inflammation. So I would definitely try to figure out if inflammation is an issue where you have the rod, and if it is, figure out what can be done about it, either with supplements or a med, if necessary. (((Hugs))) Deanna
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Deanna
On my way home from my visit w my parents. Was hard to say good-bye but we had a great time reliving good memories.
He thanked me for the long talks and taking him on a trip down memory lane. I think laughing and crying about all the great years as the oldest of 7 children and all our crazy antics camping, fishing, etc
I feel happy we could share this time. It's probably the best Christmas present I could have received.
I know it's been a tough week for many of us regarding pain, nausea, weakness etc but know I'm holding you all on my heart.
Amy
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Rachel, your weight isn't bad for your height. In my glorious youth I was 123 and shapely, not skinny. Hollywood would have told me to lose 20 pounds!
Of course you're crying. It's fear of the unknown. Information is the antidote, so dry your eyes and tell them you want to speak with a cancer specialist nurse while you're there. Ask all your questions, tell her your circumstances. Talk about your diet, your procedures, your medications. Knowledge is power. The unknown becomes a worst case scenario in our heads, whereas the truth may be some simple, easy-to-manage thing.
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Hello ladies,
I have been reading this board for several weeks because I have had a lot of new pain in the sternum area of my chest and also periodic (not constant) almost stabbing pain in an area of my ribs.
I know I will miss some of you but wanted to acknowledge some also.
Myra, you amaze me. I know that you are going through so much and you still have the energy to even post here and encourage others. That is what I so love about all these boards. I am thinking of you and sending positive energy your way.
Rachel, the same for you. I hope the new treatments help you begin to feel better.
Deanna, what is curcumin and how does it help with inflammation? I have hosimoto's and know that at least some of my pain is caused by inflammation so always am looking for things that help with that. I have for the most part eliminated gluten for starters.
Patti, you have been through so, so much and you keep what seems to me an incredible attitude. I pray you start to heal and feel better soon.
All the rest, I thank you so much for being here and sharing your experience it really helps even those of us who haven't been diagnosed but are scared of a reoccurence to the bones.
I am having a bone scan this Friday for the pain in my sternum and ribs. I am of course a bit freaked out. I asked for a PET scan because from what I read on here it sounded like some of you didn't find your bone mets from the bone scan but rather from a PET scan but my MO said that my insurance won't allow me to have a PET scan without doing a bone scan first.
Thank you all for being here and allowing me to pop in and share.
Julieho
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I'm going to just address a few here and send hugs to everyone else.
Myra - I so agree with what you MO said - go on the cruise, ignore cancer for a bit, and then get back to it after the new year. And get the second opinion. Sending good thoughts and hugs; hope you have a wonderful cruise - you deserve something nice after the crappy tests you're facing for the next few days.
Chris - I'd echo what Linda said regarding the femur rod thingie. Mine's nearly 3 years and still aches sometimes. Although I'm told that some of the pain I have is actually from the bone regrowing. I have arthritis in my left knee (bone on bone) and would sell my soul for a cortisone shot. I've had them before and they last 6 to 8 months. Takes about a week to really kick in and won't 100% cure the pain, but when it wears off, you realise how much it helped. My doctor "doesn't like to do knees" and just won't set up me with an appointment for another shot. Oh well. You have been through the mill and here's hoping your scans turn out well.
Julieho - hope your scan goes well too and that it's not recurrence. Sounds odd to pray that someone has arthritis...:)
Terre
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No good or bad news to post save the never ending seesaw of blood results. Rachel - I am having platelets and or red blood transfusions every other week or so as the numbers ricochet up and down. Platelets were 30 at last treatment! I am sure the transfusion will make you feel better as others have said. In the meantime, here's a photo to I hope raise a smile
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I just got this from someone and had a REAL good cry. I thought maybe you would like that too. So apropo after reading all the posts.
Garth Brooks giving homage to a lady with stage 3 C, always loved him.
Amy how touching this time in your life. It is a beautiful way to think of someone, and you gave him these nice memories to think of, how precious for you and for him.
Myra - thanks for letting us know where you are holding. Just know they could do Gamma Knife maybe to the area(which is a more precise type of rads, that is what my daughter had, and then she continued with more treatment, it made a small difference, but it did.
Julieho so glad you are having it looked into so fast. It is true they might need certain tests before they approve Pet/Ct but once when it was real urgent, we paid out of pocket to have it done the same day that an MRI was done, and worked it out with the place that they would only request of approval after and when they get reimbursed they gave us back our money. Gotta do what we gotta do. It doesn't always work I am sure.
Rachel my daughter had lower count than that, they still hold off on transfusion, but we are always on the ready, at least they are taking care of you, like Linda said, hopefully you have someone there with you.
Terre how are you coming along? As you said how the priorities change right? when Dani was stable for like 4 wks, I was devastated that it did not show less lesions on the scans but "stable", then everyone here told me how "stable"is good!, and then as quick as it came it went, "stable" left the stable awhile ago, and now oh, how I would wish for just that.
We'll know tom more re TM's for Dani, we are of course very hopeful, bcs if it doesn't break tom, then I don't think this new tx is working. Her little one came down with high fever and real sick. Doc would not want her next to her, but she said she won't leave the little one now that she needs her so. So let's just hope it goes by real fast.
Chelle you had the scans today?
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This is the video
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Myra, I saw Erica Mayer at DFCI. She was very pleasant and personable but I honestly didn't get anything new from my visit with her. She confirmed that my MO had a good plan in place. I had hoped to discuss trials, alternative therapies, nutrition etc but they (or maybe just she) was not geared that way. DFCI is a well oiled machine, they can move a lot of people and stayed right on track. It's not someplace I would want to seek treatment unless it was a trial or cutting edge therapy, I felt like we were just cattle being channeled through the chutes. It simply wasn't the holistic (mind, body, medicine, nutrition and cutting edge science) visit I had hoped it would be. It was not a waste of my time though, she did recommend me to a cardiac oncologist. I hope you have a fruitful visit.
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Good morning all,
Amy, I'm glad you had that precious time with your Dad. My deepest condolences to you and your family. That's exactly how I'd like to go when my time comes. How are you? Are your rads finished?
Rachel - thinking of you this morning and hoping the transfusion helped.
Julie - Welcome but I hope you won't join this thread after your bone scan. Bone scans can show a lot of things like arthritis, inflammation or other. I've had things pop up on bone scans which was then compared with a CT scan and turned out to be arthritis. I also take turmeric in pill form for inflammation and joint pain. Best way to take it is with black pepper and raw olive oil so ideally with a meal. The pepper and olive oil boosts the effect of turmeric. Best wishes for your bone scan and please keep us informed.
Bosco - Simply adorable! Is it a miniature poodle? I had a smile on my face from ear to ear!
Mommal - praying Dani's TMs show improvement today.
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Glad you liked it - he is a Lagotto Romagnolo. V loving
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Hi Linda,
Yes, finished 10 rounds of rads to spine and hip a week ago Monday, which btw, kicked my butt. Needed the down time in WA around my parents to physically and emotionally recover, which I feel I did. Was so nice just lying low and mostly just visiting with my parents. Not sure how much time my father has left. Clearly he's weaker and his world is very small. He moves from his bed to a sofa or recliner and that's his day.
We took many trips down memory lane which we all so enjoyed. I'm happy to be home again, but it was hard to say good-bye not knowing if this was final.
My thoughts and prayers to every,one here suffering and fighting the good fight...if there is such a thing.
My love,
Amy
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Amy - I'm sorry, I misunderstood. Please forgive me.
Bosco - I have to look up those dogs. Never heard of it.
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Good Morning all,
Bosco, Thanks for the photo of your dog. Adorable. Made me smile for sure.
Terre, You know I love your kittens. Another smile for me.
Amy, Rest up now and recoup after your trip. Glad to hear that you felt you had quality time with your dad and family.
LindaE, Be sure to send a photo of Praline when you can.
Moma, The video is inspiring. Thanks. How is Dani doing with her little sick one? And You? How are you?
Julie, Linda is Right. The bone scan can show arthritis, but it also can show suspected mets in the bones and often more tests are ordered to confirm that suspicion. You are on the right track.
Myra, you have a very busy next few days. Know that we are all here for you.
Rachel, are you feeling better?
Annie, Any improvement?
I only have 3 more rad sessions and I'm done. This one was short. My best to all......Linda
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There's nothing to apologize for Linda -
Amy
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