Bone Mets Thread
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I am emotionally numb and vacant--last night discovered a lump in my left breast. Waiting for a call-back from onc's nurse. What's going to happen to me?
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Hi Ladies,
It has been a few days since I've posted and quite a few posts to catch up on. Apoligies that I am not responding to everyone but you are all in my thoughts and hoping treatment is kicking your cancer to the curb. Also - sorry if I am bringing up old posts as I am a few days behind.
Myra - I am so sorry to hear about your recent update. My heart goes out to you and I am posiitve that you will get the best treatment to minimize the effects of this new dx.
Dlb823 - Nice to hear you had a good time in Vegas. Hope you won some money if you chose to gamble!
Jazzy - my mom is also getting Falsodex injections. I read somewhere on here to make sure she is getting them slowly to minimize bruising. She is. Glad the increase in soft tissues is nothing to be concerned about.
50sgrl - thank you for your warm wishes. My mom is in full swing of treatments and I think it is definitely getting the best of her. She is SO tired from rads and she tells me she tries not to dwell on her dx but she is definitely very sad about it. I am as encouraging as can be and hope that over time and as treatment starts to work that she will be less sad.
Momall - I will definitely look into that book 'pretty is what changes'. Thank you for the suggestion. How is Dani feeling? I know it must be hard to not feel so broken but we are all here for you and Dani!
Cjanet - oh no about the real estate deal falling through for your DH. Hoping it is only a minor setback and also that your meds are helping with the pain.
Chris1959 - good luck with your scans tomorrow!!
Lindalou - glad that you only have 3 left! Hoping all energy is restored right afterwards.
As for me and my mom. I am taking a vacation day to drive her to her appointments tomorrow and then sit in for the genetics counselling appointment. Hoping for some nice quality time. She says that her Onc. is positive that the bone mets will not kill her but she is so fearful if and when it will spread outside of the bone. I'm assuming there are women on here that it has never spread outside of the bone and hoping the doctors can contain it.
I did a stupid thing the other day and checked out a bunch of ladies profiles on here and saw when they joined and when they last posted and/or signed in and saw so many that stopped posting after 2-3 years which of course got me all sorts of worried. I know that many are doing well after 4,5,6+ years and hoping my mom falls into the bucket of going NED for a long time. She still hasn't told anyone outside of the immediate family and I feel like I am keeping something from her mom (my nana). My heart breaks for how scared she is to tell family.
To everyone on here, glad to see many of you getting into the holiday spirit and busy decorating. Don't overdo it and as a daughter, don't be afraid to ask your family and kids for help! Moms like to think they can do it all but you do not need to. You'll be surprised how willing your family is to step in.
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Good morning,
Rachel- I hope you are feeling better. The transfusion will make you feel better, and is a good thing to get, in my mind, to boost your blood counts. ((hugs)).
Amy- I'm so glad you had the trip down memory lane with your parents. It is the best present. I love going down memory lane with my sisters, especially now that I'm ill. ((hugs))
Bosco- dog is adorable and just what I wanted to see today!
Mommall- I'm glad Dani is able to cuddle her little one even if she isn't supposed to be doing that! I do that too w my kids, even if I get sick myself. I just can't NOT do that. I pray the tumor markers come in lower and that Dani does not catch what the little has.
I am considering more and more going on disability and just saying f&* it to the money. But I keep holding on. I will discuss at my next onc appointment Dec 28th. I am so tired of being the one to go out working and my DH is home unemployed. He is applying to jobs nonstop at this point though and claiming unemployment, so at least that. After the new year, I think things may turn around a bit for him, or at least I hope.
I feel like the burning pain in my neck is only getting worse. Not going to ask for a scan though, it's just too soon. Every day it's harder to get up. Don't know if the oxycontin increase is helping w that, but let me give it several days before I know for sure.
Hi to everyone else, hugs!
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Kendra ((hugs)). Hang in there, don't drive yourself crazy. I mean you already have metastatic breast cancer, this can't be worse than that, and many lumps are benign, remember that!!
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in hospital waiting room right now, to see my onc
- Valerie
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I am keeping you in my thoughts As Iwrap my arms around you in a virtual hug.
Lynne
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Valerie, I just saw your post and want you to know I'm adding my prayers that this turns out to be something totally benign. But so sorry you're even going through this... Deanna
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Valerie, ((hugs)) Dee
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I had a bone scan last week and my oncologist said there were no changes since the last scan. Well I got a copy of the scan and it shows two new spots, one on my left humerus and one on my right femur. Both are about 2 cm and at the end of the report there was an addendum that these were there subtly in August but not mentioned in the report. I'm so confused! My tumor markers have dropped again to 30!
Is 2 cm in the mid shaft of the femur serious? Does this mean surgery? I see my oncologist on Monday, hoping to get some answers
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julie, to answer your question above... Curcumin is a component of the Indian spice, Turmeric. It has a lot of healing properties. Here's what the Medical Medium, a natural health guru I follow, has to say about it...
"Turmeric is a natural wonder in the healing world and has been used as a powerful anti-inflammatory, antioxidant, antiseptic, and anti-depressant since ancient times. The main component in turmeric, curcumin, has phenomenal anti-cancer properties and has been known to help to inhibit prostate, skin, colon, mouth, esophageal, lung, stomach, pancreatic, liver, and breast cancer. Turmeric is also a known blood purifier and helps to soothe respiratory ailments, improve liver function, support the circulatory system, regulate menstrual cycles, prevent cognitive diseases such as Alzheimer's, and heal gastrointestinal disorders. Turmeric significantly decreases inflammation that is attributed to arthritis and other auto-immune disorders such as lupus, irritable bowel syndrome, fibromyalgia, and chronic fatigue syndrome. Turmeric also helps the body to digest proteins and fats as well as to regulate blood sugar for diabetics. It's antioxidant properties have beneficial anti-aging effects and its anti-fungal, anti-bacterial, anti-microbial properties aids in healing skin wounds and abrasions as well as inflammatory skin irritations such as psoriasis and eczema. Turmeric is available as a powder, capsule, tincture, tea, spice, and/or ointment. Supplementing with turmeric or adding it to your diet will provide benefit for your whole body and is one of the best things you can do for prevention, repair, and longevity."
Curcumin is the active part of Turmeric. This is what Life Extension (the supplement manufacturer) says about Curcumin:
"Super Bio-Curcumin from LifeExtension provides superior absorption for this powerful polyphenol. Curcumin is a compound found in the spice turmeric and has been in use for thousands of years in traditional Ayurvedic medicine. Modern science has found that curcumin has remarkable antioxidant properties, making it one of today's most popular herbal supplements. The problem is that curcumin is poorly absorbed. Super Bio-Curcumin absorbs up to seven times better than conventional curcumin. So this patent-pending formula represents the most cost-effective way to supplement with this critical nutrient. This product contains NO milk, egg, fish, peanuts, crustacean shellfish (lobster, crab, shrimp), soybeans, tree nuts, wheat, yeast, gluten, or corn. Contains NO sugar, and no artificial sweeteners, flavors, colors, or preservatives."
It's great that you've eliminated gluten. Is that helping you? Are you taking Synthroid? If so, you might want to look into a more natural thyroid med, such as one of these. http://getrealthyroid.com/why-get-real/westhroid/
Synthroid contains fillers than can actually cause inflammation.
"... colour-coded, scored tablet, debossed with "SYNTHROID" on one side and potency on the other side containslevothyroxine sodium, USP 25 µg. Nonmedicinal ingredients: acacia,confectioner's sugar, FD&C Yellow No. 6, lactose, magnesium stearate, povidone, and talc." Deanna
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Valerie,
Hoping all goes well.
Daughterlove15,
Although our stage IV odds are not the best, there are many reasons why people stop posting, beside passing away. I post less than I once did, as do quite a few, because we are busy and doing well. Some just burn out from the losses here or being too "steeped" in cancer world. Please don't use whether we post or not as a barometer or measuring stick for how stage IV goes. One never knows
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TerriJ:
Last week I had a bone scan that showed new activity on my right 8th rib. It also demonstrated increased activity in T10-12. My tumor markers dropped too. I had a PET yesterday to see what was going on and there was very little metabolic activity in T10-12 and none in the rib, these lesions are active on the bone scan because they are actually healing. My tumor burden is decreasing. I'm hoping yours is the same. A PET will confirm.
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Thanks Maine, that's comforting to read. All my bloodwork is perfect and CA 27-29 has dropped from 85.9 in July to 30.3 this week! I'm hoping this is all good news.
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Valerie it may just be a cyst or fat deposit or any number of other things. You are in my heart and I'm wishing you the best outcome.
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Valerie, How did you make out at the onc's office? Have you had any tests or are any planned or was your onc able to give you any information?
Terrij, it seems encouraging that your tumor markers are down dramatically and that your blood tests all look good. I do understand how you feel. We all assume the worst when something shows up on scans or we feel a new twinge of pain. Many times, things are still okay. Hopefully your onc will have encouraging information for you on Monday.
Daughterlove, I agree with Caryn. There are many reasons people stop posting. Many times people post when they are having problems and need support or are trying to adjust to the initial dx. When things are going well, they feel no need to sign in. Other people stop posting because they begin to feel that they need a breather. Luckily, for people like me, there are still many wonderful women here who continue to offer support and advice.
Amy, I am glad you spent time with your parents. I am sure it was difficult for you to leave.
Rachel, how are you feeling? Did the transfusion help?
Cristina, it is certainly worth considering disability, but make sure you do all your research first. Are you and your husband still considering moving closer to your sister?
To everyone else, I hope you have a peaceful, pain-free night. It does not feel like December here in New Hampshire. We have had no snow, and the temps are well above normal.
Lynne
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Thank you. So many of you asked after me and it means so much to me that you care. The transfusion made me feel great. But the emergency pet which is scheduled for Friday totally unhinged me. So much so that I took quite a few meds and mixed with alcohol and I never drink. I'm now so hopped up on Xanax that I'm barely functional. No one seems to get what the stress of this dx and scans do to me. I wish I could put it in perspective, but I get so frightened that I just want it all to stop. Please keep me in your prayers. I have two kids that I want to be here for.
Xo
r
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Valerie oh sweetie, waiting to hear from you, it's very upsetting that's for sure. Warm hugs your way.
Rachel I know the anxiety is overwhelming, no, the world cannot possibly understand this merry go round, that is the reason our family doesn't share. Those that know are always helping and never ever ask questions. We understand. Keep the Xanax.
Bosco so long didn't hear from you, how are you?
Maine so glad the PET was not too bad.
Linda counting down with you! The video meant a lot to me.
So the little one still is under the weather, today was still a tough day, I went over there so Dani could go in for tx. It was good that it was not last week, bcs there is no way i could have managed it. But I am taking the sleeping pill, i do feel like I am in a fog, my memory is kinda shot, but maybe with time it will settle. The TM's came in today, but they could not fax it to me today and we did not get to talk, so I will know tom.
Cristina - no there is nothing I could do, but hope she does not get it. Her WBC is low. But I'd not be able to get her away from her.
Let's hope we get better news around here. GN
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Hello all!
Had my second interview today for the "Living Well with Metastatic Breast Cancer" The study will not be completed until the Fall of 2016, but she is going to be sending me updates as it goes along. I will post if there is anything of interest to us. She is going to be doing presentations all across Canada over the next two years. Anything to get some much needed publicity out there that BC isn't all pink & if you catch it early, it's all good. She did say to me that she has been uninvited to a couple of conferences because she is the "dead & dying Breast Cancer presenter" and they don't want to bring people down. I thought "wow, I can't believe that, are people really that shallow that they don't want the truth, even if it might be unpleasant?"
Anyway, I'm exhausted from today, but want you to know that you are all in my thoughts. Cheers, Dee
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Hello ladies, I am amazed at the support given here. Deanna- you r definitely the voice of wisdom
Rachel- I agree w/ who ever said u might need to eat some red meat, I remember a long time ago hearing a woman's testimony about having some form of cancer & being veggie, her doc told her she needed to eat the meat for the moment, when she was stable she went back to being veggie. I am a nurse, unfortunately retired, never liked oncology, too depressing. I have great respect for those who do it, they must see a lot of tears. I got my Zometta today & I was in tears when I saw my labs, I had notified my dr ahead of time that I had resp thing happening, laryngitis, productive cough. My dr is good about giving me a liter of fluid when I get my Zometta. Any way, u r not alone, I know I hate that we all have bone mets& r waiting for the other shoe to drop, but I appreciate this thread, even though I do not get on more often, I think about all of us, what we share, & continue to pray for us all.
We are pretty amazing. Much love to everyone. Sue
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Another thought on transfusions, if u know u r having surgery or start requiring more transfusions, u can ask family to donate for u , u just need to give them a few days to process. I have 5 sons, very strong, they all said they would donate, & the thought of getting their healthy blood...Sue
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hi to all
reading but not posting so much.
Lindalou glad you are almost done with rads and hope your pain is better.
Such kind words daughterslove. It has been a learning curve for me to avoid being swept away by fears of the future and what my time clock might be. I like to plan so financial matters and health insurance are delt with but the rest of the future fear brings very little. to my life rigjt now. But tomorrow I might jump in it with both feet. Wishing you and your mom peace.
Amy, Your visit sounded just right. You seem so strong to be able to share that time with. your father. I imagine it was a wonderful gift for him.
Kendra wishing you peace.
Peace to all for the holidays and the new year.
Mary
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Good morning all,
Rachel, glad you're feeling better and I hope you had a good night's sleep. Be easy on yourself. I'm keeping you in my prayers.
Valerie - looking forward to hearing from you.
Dee - Isn't that terrible that those conferences don't include her? Anyway, if she comes all the way to Quebec, I would be happy to collaborate.
Sue2009 - glad you popped in. Good luck with Zometa today and hope that nasty infection goes away soon.
It's rare that I'm writing at the crack of dawn (about 7:00 am here) but I have blood work this morning. It's disrupting my morning routine LOL.
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Dee, It is just awful that your interviewer has been un-invited to conferences. It is just another example of how the main steamers try to keep us in the shadows because no one wants to hear the whole story. We are the ugly stepsisters. It makes me quite angry. I was hoping things were beginning to change, but we obviously have a long way to go. As long as the truth is hidden, the funds needed for finding a cure will be not be pouring into researchers. All this because they "don't want to bring people down". I am glad that the interviews and the study are taking place. Please let your contact know that her work is appreciated by this mbc'er and I am sure by many others. Thank you for the update.
Lynne
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Good morning, dearest of friends, how can I thank you for helping me through this. I hung on each and every word you wrote to me. My oncologist said this is not a catastrophe. She examined me, said funny things to make me laugh. Then she said, Okay, yes, there is a lump, I can feel it. I can't tell, though, if it's a cyst or if it's cancerous. Then, she told me I'll get a mammogram and ultrasound, which will identify the lump, and then she'll have the results sent to my surgeon, who will evaluate the results, and determine if I should have a cyst excised or a biopsy of a tumor. She said I would be able to take my surgical level dosage of Ativan for either of those procedures. Then she said to me, "This is not a catastrophe. I know the shock has shaken you, but it is not a catastrophe so I want you to do whatever it is that you do--zen or holding a stone or whatever calms you down, and just relax." I asked if I could wait till tomorrow for the Mammo and ultrasound, and she said, "Oh, the hospital will arrange for a date and call you. It's actually not urgent...let me put it this way--if you told me your plane was leaving tomorrow at 5 pm and you wouldn't be back for five weeks, I'd say, okay, get these tests when you get back. But--we're going to do this right away, right?, because the sooner you do it, the sooner you can get it off your mind." Wonderful doctor. I was so upset, though, that I forgot to ask the pivotal question: "If it turns out to be a cancer tumor, does that mean the Arimidex has stopped working?" And, she didn't bring that up, either, so all I can do at this point is pray. But, from the time analogy she gave me, with the plane and waiting five weeks, I feel I have a reprieve from harm, and I'm slightly relieved. Still tense, but more confident than before. Thank you, every dearest one of you, for bolstering me. I will keep you posted about the tests and my surgeon's decisions.
With love,
Valerie
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Valerie,it sounds like you have a wonderfully thoughtful, compassionate doctor taking care of you. I am glad that you were able to see her so quickly. Once all the tests are completed and the results are studied, your healthcare team will determine if the Arimidex is working and what the next steps will be. Whatever happens, remember that you have good people to resolve the issue. You will get through this. You are stronger than you think, and we are all here to give you added support. I will say a prayer for you.
Lynne
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Momallthetime
I've been lurking rather than posting - been v busy at work topped up with blood and platelets transfusions and then treatments. Last scans showed mild progression and platelets keep falling off a cliff (15 today instead of 150 so waiting for another transfusion to make sure I can have treatment tomorrow). Also had RT to hip as the lesion there was becoming painful again. Hoping the relief will kick in soon.
I hope this is not insensitive given problems others are suffering but two pieces of unrelated good news though. My son has gained admission to his first choice university, and my onc has said OK for me to go on holiday next week. So we are off to Hawaii for a couple of weeks.
The dog (pictured above) alas cannot come with us so he is off to country kennels.
Wishing everyone a happy, peaceful and pain relieved holiday season
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Bosco, I am sorry for the issues you are having with platelets, progression, and pain. I hope it all improves soon. It is not at all insensitive for you to share your good news. I LOVE to read good news. Sometimes we dwell on the negative things, but the positive things are very important. Congratulations to your son. That is very exciting to gain admission to his first choice school. And you are to Hawaii? That is great!! Two weeks in paradise will be wonderful for you. Have a great time. Enjoy every minute. Happy holidays.
Hugs, Lynne
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Bosco,
Good news is good medicine. You must be very proud of your son. Two weeks in Hawaii? Sounds very therapeutic . I feel better just remembering those warm tropical breezes.
Here's to a good weekend for all. Restful, pain free and filled with peace and love.
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Hello ladies,
Hawaii sounds like the best medicine! And a big shout out to our good doctors who talk us down of the ledge with some frequency. It is reassuring to be able to avoid panic as new things pop up.
Looking forward to some time with family and planning to take the anti anxiety meds to control random crying jags when I think of things I will miss in the future. Switching to a lower dose so I can stay awake and enjoy the moments that make me cry...
Brain scan turned out clear yesterday, so for now these are just regular PITA headaches rather than cancer related. Thank goodness for small mercies...even those that may be short lived.
Thank you all for posting the cheerful pet pix! We are considering getting a pet after taking our "still feeling good adventures." Hopefully these last through the summer. I think DH will enjoy the companionship, too.
On a medical note...The Ibrance dosage numbed my fingers and took out my platelets. So we are off for a few weeks and then starting a 100 mg dose instead of the 125 mg. Letrozole hasn't been bad as far as SEs after 6 weeks. Haven't noticed problems with Xgeva either. I also noticed the SEs less while I was at a Blackhawks game! Maybe it would be good to get out more!
For those retiring, I was "let go" when they knew I was having tests and initial DX. Not the best way to exit a career, but it's been nice to be free of the job stress after working for many years. I have about 30 years of unfinished projects to enjoy. My heart goes out to those here who are continuing to work and juggle family, and support other family members with cancer...praying your support networks provide you some time to work through all the issues that come with this DX. The Social Security folks were very helpful although there is a five month wait for disability benefits to start.
My daughter wondered if counseling or antidepressants would be worthwhile for the sadness I'm experiencing. Trying to imagine the conversation with the counselor...what could she say that would make this seem better? Some drugs make me feel two steps behind and it seems important to me to be in the moment as much as possible. Anyone with a good experience with antidepressants or counseling?
Goal of the week is to keep sadness at bay so I can savor the time with friends, family and the good times. Hang in there ladies! You are a lifeline!
Kathryn
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Valerie I was so worried about you. Definitely makes sense what Onco is recommending, mamo/sono is def a beginning. Maybe you could call the place yourself, sometimes they could have a cancellation and you could grab it. I always like to check these appointments myself anyway. Soon enough you will have a better understanding of what you need to take care of.
Kathryn, I must tell you i had a very bias opinion on counseling, but i went to a very reputable person, he was not patronizing and really help put things in prospective. So if you get the right fit, (and I really dislike the school that thins that if your mom looked at you the wrong way that's why you feel so and so...), anyways this guy was more like a hands on person on how I travel through the ordeals now. I would strongly recommend to everyone, AGAIN most important is that they understand and not patronize you. Meds, are also on the table, depending on which and the dosage. You should be the boss on what and how much. Good luck. Btw, Hawaii seems to be right up there on therapy!!!
Linda hope for the best on ur BT results. No wonder you could not sleep. HUGS!
Deanna I copied what you posted, it seems very interesting.
Mary you wrote so eloquently
Dee so sorry you had to hear about the "others" not wanting to be aware of WHAT really is the true story. Yes hope is important for the newbies, the shock of hearing that someone has Cancer and the energy to go thru all the testing and new regimens. Also, many are so young, many like many here, looking forward to a nice retirement having to deal with such a life change.
Dee and Lynne so true about being the ugly stepsister, i just saw a small clip of Tania Katan, she was dx at 21yrs old first then, 31 again, so she is a comedian, she uses humor to deal and spread the word, and she just had gone on a marathon for Komen, and she decided in the coffee room of the get together to take off her shirt to show mastectomy scars(she did no reconstruction) anyway the asked her to leave as to not offend the women there. They wanted to keep it all pink.
https://www.youtube.com/watch?v=HGV6eOziEY8
One might not agree with all she says BUT the irony of it,is deep!
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