Bone Mets Thread
Comments
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Chatter99,
I am sorry that you are in so much pain and hope you find a solution to breakthrough pain soon. Just like the term bc encompasses a wide range of symptoms and implications for daily life, so too does stage IV and bone mets. It really is a spectrum of symptoms. I don't know all the meds you're taking but many can cause assorted digestive upsets, upper and lower! Ask you doc about that and see if he can't hook you up with a pain management specialist. Thinking of you.
Caryn0 -
Hi all,
I'm working full time too but I am thinking I am just about out of steam to keep on and how much longer do I really want to do it. I'm 58. Ayone out there who can tell me how they made the decision to start the disability process? I have short term and long term at work and from my very limited knowledge, I think with stage IV that makes you automatically eligible to apply for ss disability. What I don't know is...when do i pull the trigger on that either through work disability or SS? I want to enjoy what time I have left and I physically don't see myself being able to keep up this pace I've been on? Please send me your thoughts. I feel like Scorch too! thanks
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chatter99 - Xeloda can be very rough on the stomach. I had awful reflux and bloating from it. Nexium helped a lot and when I ran out of samples of that, I started using Zantac. All chemo seems to give me reflux. It's a constant battle to keep it under control.
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Rangermom (love that),
I found a thread (naturally I cannot find it now) that addressed this specifically--someone wondering about disability vs retirement. I found it very helpful and learned a great deal. I can only tell you to look for it in the active topics and it's on a Stage IV board.
I have to say. I was quite annoyed that my upgrade to Stage IV came with no perks. Or so I thought, Seems we get first in line for disability! (Hey, it's something. These days I'm not picky.)
Scorch
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Thanks Tish and Caryn for your caring words. I hope someone can answer your questions, Rangermom. And thanks Cynthia re digestion issues and Xeloda. I was taking nexium but I was worried about long term use. Also, it was better for awhile. The GERD came with the strong underarm pain, before dx, letrozole or chemo
I was a bit raving mad last night, so I hope no one took my post wrong. I did not mean to imply that those with Stage IV who are still able to work or be active are in less pain or are less sick than I am. I've always thought I withstood pain stoically but perhaps not
Hi Scorchy. I haven't looked at your blog for awhile but really enjoyed it previously. I'll have to get caught up.0 -
Re disability insurance. I always thought once you had cancer, there would be no question of entitlement to benefits. I've learned that is not so and i feel terrible for those struggling financially wile going through cancer. I guess there are just too many with cancer and many are surviving for years after diagnosis.
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Took a break from the boards for a couple of weeks. I guess I just needed some time away after hearing about Lowrider54's passing.
RangerMom - I might be able to give you some advice on disability versus retirement. You mentioned that your company provides for STD (short term disability) and LTD (long term disability). Not all companies provide these options and the specifics can vary.
I started by going on STD. Then I tried to come back to work on a part-time basis using STD on my off-days and regular pay on my working days. But I finally realized that I just couldn't do it anymore so I made the decision that I was either going to go on LTD or else retire. I was advised by two good friends (one had worked in Human Resources and the other had been the refinery Nurse) to try for disability first because it was a much better financial option than retirement.
I'll explain how it works at my company. You are provided 6 months of STD. You have to use up the 6 months of STD before you can go on LTD. Between my remaining vacation and STD, I had about 3 months of full pay left when I decided to apply for LTD. The company uses Aetna and it took me the full 3 months before I finally got the answer that I was approved. However I was stage IIIc at the time of my application. Had I been stage IV it would have been faster.
Now that I am on LTD and will never be able to be rehabilitated to return to work I can stay on LTD for 42 months (this is definitely a company specific timeframe). While on LTD I get 2/3 pay which is almost the same pay I was getting minus my 401K benefits and the money that the company was putting into my pension. Aetna pays me once a month and I have them take out taxes. Another positive about LTD is that I am treated like an employee when it comes to medical insurance. So I pay the same amount as the other employees -- just have to mail the payments myself.
So I am close (within a couple of hundred dollars) to getting the same paycheck that I got while I was working. So I don't have to dip into my 401K or pension. They no longer get money added but since the economy is better they are growing with the market. I'm 54 so the longer I can refrain from touching these funds the better for when I'm a crabby, old lady (the goal of all of us on the boards!).
Since Aetna doesn't want to pay any more than they have to, they require me to apply for SSDI. I just got word last week that my application was accepted. So now Aetna pays me X dollars less each month where X is the amount that I get from Social Security. So the total paycheck is the same - just comes from two sources now.
I'm not sure when I'll actually retire. Probably when I hit that 42 month limit.
Hope this helps. You really need to talk to your company's Human Resources department. I wish you luck! Send me a PM if you have questions.0 -
Chatter99: Glad you're reading! Thank you for the kind words.
Anacortes: That was great information! Thank you.
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I'm newly diagnosed with Stage IV IBC with several spinal and rib bone mets. Have had 3 rounds of AC followed by Neulasta, one round with Zometa. Always had a bit of back pain due to arthritis, but seems worse since starting chemo. No surgery date set yet, have much more chemo to go. Having another PET this week to check on chemo progress vs. mets. Fingers crossed.
Was unemployed at time of diagnosis and seeking work, wondering if there are other places for financial assistance (mortgage) than PINK fund, as UI benefits are expiring. Applied for SSDI, but am in limbo. Any help would be appreciated! On a "good" "off day" I can make it to the food shelf, but things are definitely getting harder with each round...
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Annacortes thanks for that info. Very helpful. I have ltd but not sure how the insurance works. That would be so fantastic if the ins would cost the same. That is one thing that holds me back from checking into this. Problem is I am not disabled and feeling fine so far. I just don't want to waste this feeling good time working full time if things are going to go downhill. And who knows if or when that will be?
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Chatter99,
I do think GERD comes with the territory for chemo, at least it did with me. I apparently had a small gallstone that got very aggravated with chemo. 3 years later I still have to take Panthroprazole, which is a bit stronger than Prilosec daily
Terri
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MNHarley,
I know the only thing that started to help me feel better during chemo is a drug called Emend. You usually have to ask for it as its the big guns that helps you not feel so nauseated. Do you have someone to help you run errand to food bank, etc. I know there are so many resources. Also, try your local American Red Cross and see if they can help you with transportation. Does your cancer center or dr. office have a social worker? they can also be a resource of numbers and websites. I know it takes energy just to ask about resources or fill out forms.
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Christy - ys that helps very much. when did you know physically it was the right time to go out on STD? I feeling like I can do a few more months but I'm so tired. If I can be receiving 60% of my income, that's doable for me if i downsize.
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RangerMom-
My career was in IT. I was the lead person at our refinery. My job was primarily application support, leading the other IT personnel and providing support for corporate projects being implemented at our refinery. When I was healthy I had many items that I would be working on at any given time.
After going through stage III treatment I was struggling with fatigue and daily headaches. Once I had all my treatment done (spread over a 15 month period) I focused on trying to get back to being able to do my job full-time and at the level that I performed before my dx. I worked this way for a year and than had a mini-meltdown. Went back on STD (I had restored my full STD benefits by then) for 4 months. Then I went back to work again but this time my job responsibilities were reduced to working on two projects that were self-directed and did not resume my IT lead role. I would work part-time (3 days a week) and as my energy improved I would increase my workdays and workload. It was rather ironic that my manager and I had the same plan in mind when I resumed work.
But the energy never improved and the daily headaches continued. In fact, everything went the opposite way. Even though I was making time to eat better and exercise on a regular basis, it just didn't help. My ability to focus on my job would max out after 2-3 hours. It became harder and harder to get up as I needed 11 hours of sleep each night. I finally got to the point of working half days because it would take me 3-4 hours to wake up and get the energy to get dressed, eat breakfast, etc. To maintain full pay I was using my STD hours to cover the time I wasn't in the office. Three months into this part-time situation (the month of February) I realized that I either needed to get on LTD or retire after I hit my "80 points" in July of that year. Retirement wasn't a great option because of my young age so when I learned more about LTD I knew that I had to give that a try and see if I could be approved.
Even though I did all the legwork getting my medical records and faxing them to Aetna, it still took 3 months from the time I submitted my app till it was approved. I ran out of STD so I was using my vacation hours to maintain full pay.
I have to say that I fought guilt through this whole process and even after approval I still felt like I was "weak" since so many women had gone through treatment and had no problems going back to work. Once I got the stage IV dx then the guilt went away.
Now I feel I have the time I need to try and get healthy again.
I can't stress enough how different it is from company to company. I worked for an Oil Company that has some good benefits (although they are trying to take away many of the benefits). I did some research yesterday on and my SSDI qualifies me to pull money out of my 401K if I need to without penalty. But I can't touch my pension until I retire.
Sorry this turned out to be another long answer. But it was a very hard decision for me and I couldn't point to any one thing that made me say "this is it". I had to give it the best try that I could. Not only did I decide working was doing the wrong thing for me but I also decided that I wasn't doing the right thing for my company. It was time for someone else to hold my job and get a decent paycheck.0 -
Hi, Rangermom -
I wanted to respond to your earlier question of lung mets symptoms. For many, there are no symptoms. For me, the symptoms I did have, I didn't connect the dots on, until I was dx'd with lung and bone mets at the same time.
For me, I had this dry cough for months, probably since early this year, that seemed to be worse at night, but also would happen during the day. Seemed like talking a lot on the phone (for work) would trigger it also. Nothing stopped it. I have asthma, and I felt like my inhalers weren't working. In the last couple of months, the cough was getting even worse, more persistent, and finally my husband said that I just had to go find out what was going on, that this cough couldn't be good.
I finally went to a pulmonologist, fully expecting that he'd just adjust my asthma meds/inhalers and all would be well. Well, he took a chest x-ray first, and on that x-ray, there was what looked like a swollen lymph node in my right lung (had bc first in left breast). So - he sent me for a CT, and a PET. He also did a bronchoscopy the same day as the CT.
CT showed multiple nodules in both lungs (where none had been ever before), plus a 3.8 cm 'confluence of nodes' all of which were described as metastatic disease. The bronchoscopy pathology was positive for breast cancer cells of the same type as my original dx 12 years ago. Then the PET scan lit up in all the same places, along with spine, left femur, right iliac, and neck.
I was put on Tamoxifen immediately, and have since done almost 2 rounds of Xeloda chemo. The dx was on 10/18, and my cough is nearly non-existent now. I may cough once every few days, and only once. I'm certainly not keeping myself or my DH up all night with it anymore at all. My breathing has improved greatly. I think the Xeloda must be working. And...looking back, that cough was definitely a symptom. Had it been anything else - post nasal drip causing it or whatever, it would not be responding to chemo.
I never, ever put 2 and 2 together regarding the cough. I was 12 yrs. out after all, and bought into the thinking that you're FINE if you're past 10 years. That was a convenient thing to believe, to push it out of my mind. I can't decide if it was good or bad that I lived in blissful ignorance from at least Jan-Oct of this year w/undiscovered mets or not. I'm kind of leaning on the side of, being glad I didn't know until I knew (if that makes sense). I had one last beautiful summer of not having to have this be my first thought in the morning, and my last thought at night. Now- it's a whole different ball game, of course.
Anyway - I would definitely do what makes you feel comfortable to find out. And wouldn't it be wonderful if it wasn't mets! You could then not have to worry about that for quite some time.
Hugs,
LL
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I'm starting to get a little nervous about the amount of time it is taking to restart my treatment. Scans performed on November 6th showed 2 spinal mets after just finishing my year of Herceptin on October 2nd. Had bone biopsy on November 16th and then had to wait until November 28th to get final pathology back because of Thanksgiving Holiday. My MO is sending me to Hopkins for a 2nd opinion and to discuss possible clincal trials but of course I can't get in until December 12th. Then we're running right into Christmas and I'm sure that will be another delay. My MO laid out several treatment options (PHT, TDM1, Herceptin combined with various other chemos, etc) and he also wants me to have my ovaries removed so he can switch me from Tamoxifen to arimidex and will also recommend xgeva injections to help my bones.
Of course I'm overwhelmed thinking about restarting chemo again (I had a terrible time with TCH last year) but I'm also scared to just be on tamox right now with nothing else. I'm imagining that every ache and pain is the cancer spreading rapidly.
Did anyone else have to wait several weeks before they began their treatment? Is this just to be expected with the holiday season? Any advice would be greatly appreciated.
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Don't worry about a few weeks. It's not going to make a difference and you want to be sure you are getting the best possible treatment for you.
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My onc gave my Lupron to chemically shut down my ovaries. I didn't have to have surgery. Sometimes I wonder if it would have been better to have them removed.
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Swimmom a few weeks is really not going to make a whole lot if difference so please try to relax while the process of organizing your treatment happens. I know it feels like the cancer is growing like lightening but really a few weeks is neither here nor there in the whole scheme of things.
Love n hugs. Chrissy0 -
Thanks Frapp and chrissyb. That's what the doc said too but it's hard to be patient when I feel my back pain increasing. Can't wait for Hopkins consult so I will at least have an idea about treatment.
Spamgirl my MO said he prefers removal over Lupron because of side effects. I might start out on Lupron but surgery is definitely in my future. I'm 49 so not a hardship to lose 'em.0 -
swimmom, I agree waiting a few weeks to get the right treatment plan is worth it. However I would have thought they would have started you with a Lupron and Xgeva shot right away. I believe these can be given with just about any treatment and as they are monthly, they can be stopped quickly as well. My onc gave me the shots within three days of dx, well before we decided on a treatment plan.
Hugs to you.
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Thanks sonnyb. My doc wants to hold until we get second opinion because if I start chemo I can't do arimidex until I finish it.
I guess I will know more next week but it just feels scary only doing tamoxifen. I'm hoping once we come up with a plan we can move quickly despite the Christmas holiday.0 -
I'm on only Tamoxifen and Aredia. I'm doing really well, but I know how you feel. I lamented to my oncologist that I didn't think tamoxifen was working because I had hardly any side effects. But, sure enough, my first scan after diagnosis (about 3 months on Tamoxifen) I had regression. Good luck to you and keep us up to date!
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The only thing I am on is Tamoxifen and I've had great results. It's a powerful drug.
In two months, the primary breast tumor went from 4 cm to 3cm, lung lesions (which were small to being with) halved in size, some cannot be seen. The only crummy outcome was that the two lesions in my lower back actually grew as a good tumor response to Tamoxifen. They have now shrunk. I wasn't happy about that, to say the least, but I got through the worst part and I'm working my way back. It is apparently not rare, but not common for that to happen.
Good luck!
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That's fabulous to hear, scorchy, that you are having such a good response to Tamoxifen. I have been concerned since Tamoxifen is the only thing I am taking.
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Hi swimmom3,
I have only posted once on this site, however, I have been reading ever since I was diagnosed in 2009. I have a similar initial diagnosis to you, although I had a different chemo the first time.
I also have in common that our kids are almost the same ages; I have two daughters, 23, 21, and a 16 year old son who was only 13 when I was first diagnosed. I finished my first treatments in Nov 2010 and within months I started noticing odd things; my surgery side was swelling, I had itchiness by where the tumour had been, some night sweats, and my seatbelt was bothering me. My CEA also doubled within the range of normal, but my onc said he wasn’t worried. In August I was at a family function and when my brother-in-law hugged me it felt like I’d been crushed and I was out of breath with pain. By Oct I was diagnosed with a 3 cm lytic lesion in my sternum and my TMs were definitely higher. To say I was devastated is putting it lightly. I had done my dues, the winds were coming back in my sails and I wanted to move forward. I was panicked and hardly had time to figure out a treatment which was 20 more rads to the sternum (I had already done 25) and 6 Taxotere and Herceptin finished in April. Now here I am a year later and most of the pain is gone, I’m still here for my kids, and you will be too.
I am from a small area and from Canada (which may have different protocols) but I did consult with an onc at a larger centre about clinical trials. I couldn’t go in the TDM1 and I don’t think Pertuzumab was available. I decided to do the above treatment out of the options that were available because I wanted to treat it like the first time and be as aggressive as possible. Upon being rediagnosed I was taken off Tamoxifen (I was just turning 50), started Letrozole, and started Clasteon, an oral bisphosphonate. After my sternal biopsy a week later, which lost the progesterone receptor, but was still ER+ and HER2+, I had the rads and since I had to wait to recuperate from those, I asked to have a Herceptin by itself before I started chemo. I had tumor markers done which fell after each step in my treatment. I also stopped the Letrozole when I started chemo. I have just restarted the Letrozole because the doctors wanted to tease out time from the chemo, but I feel more comfortable being on a dual blockade and my TMs were slightly increasing, not a lot, but I have problems within the range of normal and they weren’t going down.
What would I do in your situation? Definitely find out as much as you can about estrogen and HER2 positive as well as other peoples’ experiences on TDM1 ,Pertuzumab, and anything else you may have discussed with the first onc. On the Her2support.org website on Nov.29 a member named Lani posted an entry about being on chemo, Herceptin, and hormonal therapy at the same time; very interesting. I have noticed some members who are estrogen positive recurring fairly quickly after initial treatment. A member on this site named Orange1 once posted back in 2009 about Her2 positive cancer and estrogen positive breast cancer;please read it. I would also get my hormones tested (if you haven’t already) to see if I was postmenopausal. I have a hard time knowing whether I’m truly postmenopausal because I went through menopause on chemo and the treatment of Tamoxifen or an AI depends on that. My hormone numbers are showing more menopausal but I may still consider an ooph. I know you have to be careful of timelines and treatments and being as eligible as possible for a clinical trial, but find out if you can at least do something for your bones. Also, do you have your TM’s tested? If so, keep track of the numbers if you feel comfortable doing that; they can be another helpful tool.
When I finished my standard of care treatment I had pushed to get my TMs tested because I found out someone in my support group who had the same type and stage was getting them (I know for some they aren’t a good measurement, but for me they are a good indicator). I asked to continue on Herceptin, but was of course, denied. I asked to have a scan to see if I was clear after finishing the protocol treatment, but it wasn't done as protocol. I even went to Vancouver which is 8 hours away for a consultation with a head trial doctor about going in the Neratinib clinical trial. He told me I had had the gold standard of treatment and that I had a 10% chance of recurrence. Hmmmm. I sometimes wish I had gone in the trial because at least I would have had a scan and the lesion would have been found then, instead of 5 months later, however, I can’t go back. Even when I was in pain my onc wouldn’t order a bonescan so I went to my gp who ordered it. Yes, what a nightmare.
I hope I make sense; sometimes I feel as if I’m standing in front of a room full of people staring at me and I try to blurt things out quickly. I don’t want to panick you anymore than you are. I just would like to help someone else not have to go through what I did, but you seem to already be in capable hands. Just try to be informed, and possibly ask if you can taperecord the conversation; it’s hard to keep track when you’re upset and trying to ask questions, process, and write everything down at the same time. This time is so difficult because it is a lot of hurry up and wait and there is so much information to process, especially since stage IV doesn’t have any definite evidence to do this or that because there isn’t enough research for us. It’s not like the first time when you were given your protocol and told what to do and you just showed up and did it. Decisions were already made for you.
I would also compartmentalize; you have found your information and have your questions and given it that time. Turn your attention to your family and trying to stay calm in all of the storm. Listen to good music, because life is too short to listen to bad music. At least that’s what I tell my family. Decorate for Christmas. Breathe deeply. Sorry this took so long.
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Wow you ladies rock with all your information. I definitely learn so much from listening to all of you and it helps me prepare questions to ask when I have my consult at Hopkins. So thank you all because you are making me a better advocate for my own health.
Karynic, Scorchy and lanagraves:
I'm so glad you are getting good results from tamoxifen. Unfortunately I progressed while on it, so we definitely need to change my hormonal. I'm waiting to see what Hopkins suggests and then I'm going to jump all over the ovary removal process--if I have to I'll start with lupron and then schedule the surgery in January or February.
Journey61:
I appreciated all the information you gave me. You expressed it exactly when you said you had the winds in your sails again. That is exactly how I was feeling before all this happened. I was feeling great. Enjoying life again, making plans, etc. and boom, I'm stage iv. It was just luck I found out about the lesions, because I had to have a CT and bone scan to continue in the d-care study and that is how I found out. I didn't have any pain, just a stiff back, but I'm 49 so I thought it was just me getting older. Since the bone biopsy I do now feel my T6 lesion and my back gets sore (I guess some big guy hitting you in the back with a hammer will make a lasting impression). The pain though is pretty minor--don't even take tylenol for it so I realize I am very luck in that respect.
It sounds like you have a beautiful family and I'm sure they are your biggest supporters. I'm fortunate that my older boys have been such a big help to my husband and I over the past year. They carpooled their little brother everywhere, helped him with homework, did the laundry, shopped for groceries, etc. I know this is what families should do when a crisis occurs, but I truly feel blessed to be able to see what responsible and caring young men they are becoming. My youngest, is a sweet boy, with a kind heart, a bright mind, and a love of swimming and art. He took my illness so hard last year, and we haven't told him anything yet about my new diagnosis since we are waiting to hear what our treatment plan will be. I know I will have to tell him soon, but I want to make sure he knows that I'm not going anywhere anytime soon. I guess I'm going to give him information in little bits and see how well he does with it.
I've never been to British Columbia but I hear it's beautiful. I live just outside Annapolis, MD and I'm fortunate to have a wonderful cancer center right at the local hospital. It made it possible for me to receive treatment 10 minutes from home. I'm also fortunate that Johns Hopkins is only about a 40 minute drive away for my second opinion. I'm in awe that you travelled 8 hours for a consult, but of course we do what we have to do to receive the best care possible. Of course, as we both know, even the best care can result in progression. I guess sometimes it's just a crapshoot.
We do have very similar pathology because my final biopsy results of the bone showed ER+ PR- and Her2+++. Doctor said with ER+ I still will use the hormonals so he was happy because that gave me more treatment options. I guess I'll have to see what the second opinion comes up with before making a choice.
My MO doesn't do tumor markers because he says too many times they are unreliable. Quite frankly, I freak out every time a test comes back out of range so probably not good for my mental health to do them.
I'm going to look up those posts you recommended because they sound very informative. I truly dread going back on chemo because I had such a rough time with it last year, but when I look into the eyes of my family, I can't even imagine not being there for them, so what choice do I have.
I'm fortunate that my husband has come with me to all my appointments so he has become an expert in taking notes and asking questions. You're so right about needing another set of eyes and ears to process all the information that will be coming my way again. I just hope that we can come up with a solution that is going to keep me around for the long haul.
Don't worry about making me panic because I think I've been there and done that the past few weeks. Now I just feel numb and anxious waiting for the fun to begin again. I've already begun to compartmentalize what is happening because if I didn't I would go crazy. I have my "mom" persona, my "work" persona, my "sister" persona, "friend" persona etc. To look at me from the outside, no one would guess that I am really screaming inside.
Thank you again Journey61, and all of you ladies who speak with such wisdom. I'm learning so much from you all and my dream is that one day there would be no need to pay it forward because a cure was found, but until then....onward.
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LizLemmon and AnacortesGirl - thank you for your invaluable messages. 1) I am having a CT scan of the lungs on the 14th checking for mets. I've had this cough quite a few months now that I think of it...and 2) I called MetLife who does our STD and LTD to get info on the plan details and COBRA or my part of the insurance payments. Its been challenging, my HR people haven't been too helpful so far but I am going to go back to them and try to get info. The met life people kept bouncing me around to 5 different people till I got to the last one where I had to leave a voice mail...Big sigh! This week is my onc appt and I'm going to find out my prognosis (years) so I can make the best decision on what to do. I do think its in my chest and if it is, I need to know does that also affect my prognosis? I have so many questions and I don't know a whole lot still, but better than where I was last week thanks to all you have been down this path.
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Can I ask a dumb question? Is everyone's prognosis different, even tho the ACS says the percentage is 20% will live 2-5 years with IV BC? i will be asking my onc this Thursday. I was too chicken to ask the day I was first told of the mets but now I want to know so i can plan. Thanks for any answers out there.
Linda
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Ranger mom.........
I think everyone's prognosis is different, but the statistics on the Internet are outdated. It all depends on several factors. Location of mets, response to treatment, etc. I would be willing to bet the average is better today. Also remember, your onc doesn't have a crystal ball and won't be able to give you a definitive answer. Unfortunately we don't have expiration dates stamped on us, but I kinda wish we did! I am a planner just like you!0
