Bone Mets Thread
Comments
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Firelady, I, like you was dx stage IV just after five years........I hear you. I am now almost five years with bone mets and doing very well. You can live with that amount of bone mets and it is possible to have a full life once your onc gets you on your treatment plan.
It's hard to tell family and friends but when you do, make sure that you tell them it is possible to live a long life even with bone mets and keep repeating it to yourself until you believe it.
These boards are great for support, information, venting, laughing and making friends........come here often...........you are not alone.
Love n hugs. Chrissy
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thanks Chrissy. I needed this positive thinking tonight. Had a bone scan last week and it showed progression. I have been NED for 2 years. Going to Onc tomorrow. Have know idea what is next.
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Barb I hope your onc visit goes well and you come away from it with a good plan in hand. Sometimes just a change of AI is enough to get you back in the arms of NED.
Do let us know how you get on.
Love n hugs. Chrissy
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Thanks for the info about hair loss and abraxane. I don't have much anyways from cytoxin and adryamicin . But dont really want to lose what little fuzz I have. I have had 3 treatments of abraxane, I think thats 1 series, I keep looking at my fuzz to see if its getting less. My hair is starting to hurt so I am afraid it is goiing again, So much for having hair at graduation in May.
Thanks again, Redroan
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Barb- I'm in Florida, too. I hope that you have a productive meeting with your MO and shift your treatment plan to something that is manageable but that keeps you doing as well as you were. Hugs...
Firelady- Sending you positive thoughts and hugs. As many of us here can attest, the initial mets diagnosis is the worst in terms of anxiety and terror. Once you meet with your MO and devise a plan, you will feel a sense of relief that you are doing something to battle this beast again. I am only a year out from my mets diagnosis but was terrified because I have two young children. I have had some rough times this past year but can tell you I've lived a relatively normal life, have had plenty of good times, and am hoping to keep this as a manageable chronic condition. I am reminded of something my RO friend said to me when discussing things (and not merely as a pep talk): "breast cancer patients with bone mets are some of the longest lived mets patients." Though I know we all do it, please don't write the situation off as hopeless yet. There are many newer options that offer a balance between quality of life and treatment.
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Firelady, i also was just diagnosed with mets. my origional bc was in 2007. i had pain in my sternum and went to dr several times before they realized oh shit we better do scans. it was a tumor and biposy confirmed METS. i had pet scan and am lucky to only have it there and in surrounding lymph nodes... I will have radiation starting wednesdy and then a hystorectomy to stop my hormones, i am only 39 then onto HT....I told my dr the same thing, I thought i was over the 5 year mark, how did this happen, he said it never left, it as there the whole time. he said the tamoxifen put it dormant then after apx three months to be exact, the pain started and now here we are.. we can do this together. how old are you??? when is your PET scan... you and i will live many, many more years, i met someone on here the other day that is 12 years out and it is in her organs also!!!!!! you go girl! gently hugs! PS, telling the family was the hardest part, i waited til i got confirmation back on receptors then called dad, son and sister.... it sucked, we cried then we all said, YOU GOR THIS!!!!! hang in there. we are all here for you!
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Great news Chrissy!! I'm truly happy for no progression. Arthritis we almost welcome considering. The alternatives. I have suffered with it since age 19. It is so bad in my spine, my onc thought it was bc and had my spine scanned a 2nd time after bc dx. It turned out to be bc too but she said more arthritis. Then bc. I was already aware of the degeneration of the spine. The pain reminds me daily. But I Would trade it for this bc pain and all if I could.
Continued good luck Chrissy, I wish you the best. Have a blessed evening everyone!
Barb
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Thank you all for your responses. I've gone from one extreme to the other the last few hours. Finally broke down & let it all out. I met with family tonight & got that over with. For me, yes, that is the hardest part. I did call my daughter in FL and gave her an abbreviated version. It was truth, but not a lot of detail. I'd rather wait for the PET scan & treatment protocol before revealing more. Now that I've had a chance to catch my breath, I'm trying to find my drive to fight. It's there and I know I'll tap into it, just got to regroup a little first. Thank you all for jumping in & lifting me up. These boards were a tremendous source of strength & reassurance during my first journey. I'm hanging around for more during this part. Thank you all so very much!!
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Good luck Firelady. Let it all out, cause 'Panic' seems to be our middle names! You are in the right place to thump and scream. I was first dx in 1997; recurred as Stg IV in 2009. I started screaming and going nuts when I realized that this stuff is for real and support support support is all it takes. Our bodies' reaction to cancer is so different but the scientists have yet to figure that out. Stick with us, there are some great stories in this joint.
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Great to hear of the positive scan results, Chrissy! Sorry you have arthritis - it's not fun - but so glad no progression!!!
Firelady - hang in there. I think all of us here have had our "initial freakout" period of time (and continue to have follow on freakouts from time to time). I was 6.5 years from initial diagnosis (Stage 1, no lymph node involvement, OncotypeDX said <7% chance of recurrence) to having mets in my femur, hip, spine, and rib. The 'how the hell did this happen' took a bit to get past; still not sure I'm over it and my Stage IV dx was nearly a year ago. You'll get more adjusted to things, but give yourself time. And there's amazingly great support here. And stories of 15 and 20 year survivors, so it's certainly not a hopeless situation.
Good luck and hugs to all!
Terre
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Chrissy, I am starting Faslodex on Friday with Zometa every three months. Pray for no nausea.
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chrissy- sorry, i somehow missed your positive news! so happy and relieved for you, and hoping that news makes the pain easier to bear! hugs!
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Chrissy,
Good news about no progression, Not great about Aurther, but better then more cancer. Dang stuff . Very Happy for you!
Redroan
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Thanks girls, I'm very happy that it's Arthur and not mets but I am still trying to find out when the nerve pain is coming from so it is an MRI next Monday to see what's going on in my neck. Oh yeah, it just keeps on coming......lol......I keep hoping that I'll outrun it but I think I'm slowing down somewhat.......lol.
Barb check out the 'Faslodex Girls' thread there is a mass if good information there that just might come in handy for you. Hoping you get nil SEs from it.
Take care all!
Love n hugs. Chrissy
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I had a very positive experience with a doctor yesterday and I'd like to share it with you all - it's nice to be able to say something nice about the medical profession!
A bit long winded but here goes:
On Monday I was yet again at the hospital for an MRI on my knee. While there, my onco's secretary saw me and stopped to ask how I was doing. She asked about an appointment that's booked with an orthopedic surgeon in another hospital for my back. When I told her it wasn't until February 4th, she said she'd see if she could get it moved up. Half an hour later she came back to me to say the surgeon wanted me to send him over the images from an MRI done in December and based on that would see if he needed to see me sooner.
On Tuesday, a friend drove me to the other hospital and I left the images with the secretary at 11.50 am. At 1.50, the surgeon himself rang me! He said he was looking at the images and asked relevant questions about pain. He told me exactly what he proposed to do, and gave me an appointment for Friday to go through the details face to face, and we'll fix a date then for the operation.
I couldn't believe the efficiency, and even though I haven't met him yet, I already love this doctor!! I've felt I've been going from pillar to post a bit for the last few months, so I'm really happy to finally know something's being done. It's great when the system works - and that secretary is going to get a big box of chocolates the next time I see her!!
Nicky
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Wow Nicky! So glad you bumped into that secretary who got the ball rolling for you. Good luck with the appointment!
Love n hugs. Chrissy
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Good for you, Nicky! I know we've been going through some similar skeletal issues. Pls. keep us posted - sounds like you are in good hands!! A good feeling for sure.
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Great news, Nicky!
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Good for you Nicky! Makes me think more and more that orthopedists should be more involved in our care esp with bone mets. I am not so sure that scans are effectively read. However, orthopedists are specially trained to read their own scans and don't rely on radiologists.
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I have a question for those who are being treated with Zometa. How long do the side effects last after you get your infusion? I got my first Zometa tx on Dec 31, and had a taxol infusion the same day. By the afternoon of New Year's day my temperature had gone over 101 degrees. I was advised to go to the ER and get checked out, which I did, and was sent home with an antibiotic (Levaquin) for a week, in case of any undetected infection. Since then I've had fatigue that went on and on, and I'm just for the last couple of days feeling like I am starting to get over it. Scan results I got last week showed the taxol didn't stop progression, so I haven't
had any since the 31st. I'm scheduled to get the second Zometa tx on
the 24th and then I'll know how it affects me when taken alone, but I'd like to have a better idea of what to expect. I was told that Zometa can cause fatigue, aches and flu-like symptoms, but not that these effects might go on for two weeks! I talked to my brother on the phone last weekend and he said that my SIL (who doesn't have cancer) had had some sort of bug that caused severe fatigue for about that long, so now I am wondering my symptoms the last two weeks were caused by the Zometa, or if I picked up some kind of bug in the ER or at church the Sunday before or after...If it turns out the Zometa did cause the extreme fatigue of the last two weeks, I will have to ask what other bone-boosting options are available. I live by myself and can't function if I am flat on my back half the time.
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Zometa, Aredia and related bone building drugs usually (but not always!) cause flu like symptoms for a couple of days after infusion/injection. Like everything, it can be more severe for some than others. Generally, the worst of it happens with the first dose and things tend to get better with subsequent doses. Hope this is the case for you!
Caryn
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just wanted to share I gad my first rad on my sternum today! So far so good! 9 more to go. Have a great evening everyone!
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Congrats, Kate!
Curveball - my first zometa was the worst; really bad flu-like symptoms and fatigue and felt like hell for about 3 days. Subsequent ones weren't as bad; just flu-like symptoms the day after (I usually had them late afternoon) and feeling a bit yuck for a day. However, everyone is different, but the first being the worst seems to be a recurring theme here.
Good luck!
Terre
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Good luck with rads Kate! I hope it goes well for you.
Curveball, I had Zometa while having chemo too, but I have since switched to xgeva. My first zometa gave me the same se's as you, for about 10 days. When I spoke to the nurses in the chemo room about it, they decided to slow down the perfusion. I got it over an hour instead of 1/2 hour, and it made all the difference. Maybe this is something you could try?
Nicky
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curveball,
MYy first was the worst also, Second was a little better , Third was just a regular day! I take claritan before it now and a few days after for the aching, I am think it helps so I keep doing it, Mind over matter!
Good luck, Hope it gets better for you!
Redroan
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Chrissy - good news about the arthritis, not progression! I hope the MRI goes well and you get good results from that too.
Nicky - I'm so glad to hear things went so well for you this week with that wonderful secretary and doctor! I'm glad it came together so quickly!
Barb - I hope your appt with your onc went well - you're in my thoughts and prayers.
Firelady - you are in my thoughts and prayers too. I remember that feeling of the world being pulled out from underneath you - I was almost 10 years out from my original BC diagnosis when I found out about the mets last spring - had thought I'd made it free and clear after 5 years too. I'm glad you were able to talk to your family about it. Sending a virtual hug your way.
Hugs and light and love to all,
Amy
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Chrissy, you and I are on the same level with arthritis in the neck, I just had a MRI with a neurogram that showed many discs that are herniated from C2 through C5 and C2,C3and C4 are over 50% degenerated with impingement of the cord in many places, along with bone spurs affecting cord. I have pain across chest, right shoulder and down right arm into the hand. I can't pick up a glass or use my hand to write anymore. I've taken Enbrel for years even now with Xeloda. However I was told that I had to learn to write and use my left arm and that without major surgery in the neck which cancer doctors feel not now. But was told that even if I had the surgery that the use of my right arm might never be the same because of all the nerve damage. I was so worried that it was cancer and I too am grateful that it's arthritis. However I feel that arthritis for me has been so much more painful than the cancer. I've had so many surgeries on hand feet, knees etc. plus I have EDS. I'm just telling you this to say I understand and pray that things will get better for you.
Firelady, I hope things get better for you. I can tell you that I've been on Cytoxan and now Xeloda and have had major reduction in lesion throughout my bones (4th,5th rib, T1 thru T11 and L3& L4, right hip, right femur along with lungs, liver and kidneys). I can't have radiation and was so worried this was the end for me, but with treatment and allowing time a year later I am so much better, not NED but no progression which is a positive. So I know you can do this and beat what ever is handed to you with the love and support of your family.
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@firelady. You probably already got a lot of responses. I am an intermittent poster but I also have it in all my bones by PET scan. I am 8 months in to my new life and so far so good. Holding steady with just femara and xgeva so yes you can do it......
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Thank you all for your responses. I have taken a couple of
days to catch my breath & I'm feeling better. Still scared & a
bit unnerved. Had CT & MRI Friday (both w/contrast) to see if it's in my organs &
brain. Won't get results until Tuesday morning. That's had me off balance, but
I'm trying my best to just breathe deep & digest everything from the last week. Like everyone,
I'm sure, I never expected it would be like this. Tues morning I plan to be
on the phone to MD Anderson to see when I can get in there. I'm
concerned my Onc here just isn't aggressive enough. He isn't doing a PET scan. The more I think about the last couple of years & how many times I asked for labs, scans, etc., and that I didn't feel comfortable coming off Tamoxifen in Sept & wanted to stay on it a while longer because I'd had problems initially with Arimidex & Femara & didn't feel like I'd taken it long enough, only to be told the "standard" really didn't call for that unless there was concern about a real problem, & the "standard" didn't show there was any benefit to staying on Tamoxifen any longer & that even though I'd had problems with the other meds, I had been taking something for five years & that was in line with the "standard", the angrier I get. UGH! Just after my bone mets dx I was given an appt to see him & it was going to be a little over week away.. I called & asked that a PET scan be scheduled prior to the appt so he'd have all the info he needed by then & we could talk treatment. His nurse called & said he'd rather not do any scans until I came in & we had a chance to go over the bone scan & talk about what it meant. I told her Nope, not acceptable. I already had the results & just needed to know what we were going to do about it when I came in. He called back a few min later to try & convince me this was in line with the "standard" & I told him I already knew the results of the bone scan, I knew everywhere it was and I didn't need to come in only to have him repeat what I already knew, then have me wait a week to get a scan, then another week to get the results. I told him what I thought about the "standard" & that I'd been screwed by it. I apparently didn't fit in the neat little box they had come up with for my kind of cancer & it concerned me that MY concerns had not been taken seriously over the last couple of years. He agreed to let me come in the office that very day, then set the scans up for the next week - the NEXT week! Well, I called in a favor from a friend. Had my scans moved up to this past Friday, then got my appt with him moved up to Tues of this week. My dad knows a lady whose daughter works at MD Anderson & I'm planning to go there ASAP to find out what they say. It's very possible (if they take my insurance), I'll have my treatment thru them. I need aggressive this time. I need to FEEL someone is being aggressive this time. My Onc was wonderful to me first time around, but I need someone who is going to call out the Calvary for me - or at least make me feel like that's what they're doing. Am I sounding crazy??? I'm just scared....and I'm scared to death it's going to come back in my organs. I wheeze loudly when I sleep & wake up in the morning. My chest feel strangely tight. Not like anxiousness but like sickness tight. This is new for me, I haven't been doing it. As far as I know, there isn't any other problem going on. Gosh, ya'll, I'm sorry for rambling. Just read this thing over & I'm bouncing from one thing to another. Thank you for listening. Thank you for offering advice & encouragement. I promise I'm listening. I'm just really scared! Please pray for me!0 -
Firelady, first, no you don't sound crazy. You sound like someone being an advocate for yourself and that is exactly what you should be doing. Do not second guess yourself and don't apologize for wanting the best treatment and going after it. You want to feel that your doctors are doing the most they can for you. And look at it this way: they are getting paid good money to be your doctor. Even if it is your insurance paying your bills, they are being compensated financially for treating you (and you are paying for your insurance). Just a doctor visit alone is well over $200. The testing is pricey, the medicines are pricey and treatments you are given are pricey. If you were paying this kind of money to get your car fixed and it wasn't being done to your satisfaction, you would raise complaints, demand things be made right and/or go to a different mechanic. It doesn't even need to be said how much more valuable a life is compared to a vehicle.
Also, just for a point of reference, my onc and her office is accommodating when it comes to scans. My appointments for scans are scheduled early in the day, and they'll schedule me in to see her that afternoon. She is able to look at the scans and see how things look. She tells me her results are not official and that they must be verified with the radiologist who writes the report, but it's enough to take the stress off of waiting. When I have my scans, I ask that a copy of the report be mailed to me and I get it within three days of the scan. There really should not be a whole week waiting period to learn results, in my opinion.
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