Bone Mets Thread
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Dani,
I did Taxotare and Cytoxan and found it to be tolerable. I don't have experience with H&P.
The Taxotare will nearly surely result in hair loss around day 15. Some people shave their heads and others don't. I cut my shoulder length hair into a pixie and then found the hair would come out in clumps in the shower. If you're going to do a wig, you might want to go in beforehand you lose your hair.
Claritin for two days before infusion and three days after helped a lot with the bone ache and pain.
Drink tons of water and keep moving - these are hugely important. I also found sipping on bone broth really helped my system.
Good luck!
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Hiya Dani,
First time starting chemo: I thought it was going to be hell, and went with a friend and a "@#$% you" sort of attitude (mental armour). I took all the anti-side effects meds I'd been given. We chatted to the nurses, I was a bit sluggish for a while, but then woke up and chatted some more. "Thanks, that was great" I said on the way out. The nurse looked shocked - apparently they don't get that comment much. We stopped at the local bistro on the way home, and ordered shrimp eggs benedict and mojitos and had lots of laughs. She dropped me off at home. 2PM: Nausea struck. Okay, so I didn't vomit, but all afternoon I felt sick and exhausted - note to self: no more cocktails after chemo and a little less attitude? Kids came home from school and I was able to pull it together and be mom for them.
The first chemo session is not so bad, they definitely get worse (so much fatigue) each cycle. I figured out how much meds I needed to take to get side effects under control. Once I ate something I shouldn't have (raw kale and me don't work with chemo), and spent 24 hours sitting next to the toilet.
I hope it goes well for you! :-)
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Dani,
You will get tons of great advice/wisdom from the people here.
As for the mets pain, keep talking to your team to find the pain relief that works for you. It took me three tries to get a system that functioned.
In the meantime, I can vouch for topical pain relief: cold packs and heating pads. I do the heat right after chemo, thinking that it will increase blood flow to the area, bringing more cancer-killing goodness to the lesions. After the first few days of heat, I switch to cold packs. Nothing numbs a painful area faster.
For pharmaceutical pain relief, I've asked for the opiates to be unchained from ibuprofen or tylenol. That way, I get to decide what aspect of pain relief I want, and in what quantity. There is a problem with how my insurance company wants the prescriptions to go, and how I do. I want lots of little portions that add up to my daily dosage so that I can vary according to the pain level. The insurance company wants the prescription to be in a three complete doses a day model. We are working on it.
Sorry you have to join us, but so glad to meet you,
Jennifer
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Dani, are you getting a port?
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To echo what others have said, be careful what you eat b4, during & after each chemo session. No one told me last year, and I had to learn the hard way. A big, raw salad isn't the thing to do right after chemo. Even use caution with smoothies. Everyone's system is different, and some can handle it and some cannot.
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Hi, Dani ~ Don't think it's been mentioned yet, but be sure to ice your nails -- both fingers & toes -- which prevents the chemo from getting to the nail bed, where you don't need it anyway. Taxotere is infamous for damaging nail beds, and if you don't protect them, they can become very sore, to the point of the nail actually lifting. What I did -- and I see you're also in a very hot area -- is bring a couple of packages of frozen peas that I iced my nails with. I know it sounds a bit odd, but the veggies won't melt entirely the way ice does, so not nearly as messy as an ice pack. Of course, you may want to run this by your onc, just to be sure he/she doesn't have a problem with it. But believe me, it works, and is well worth the effort!
Love the photo of your daughter, Babs!
Welcome to the new women here, and hi to everyone else. Deanna
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Babs that's a cutie of a picture. So exciting. Like Animalcrackers said it's all baby.
Anita – Nemo! I am not sure who enjoyed the movie more, the kids or me. The picture is unreal.
Hey Nan thanks so much for the input. It does make sense about waking up the beast, and aside, the bones being full of lesions. Yes. It's a NO NO – I got to ask the Chief RO, she said NO. I waited 2 days to tell my DD, just told her she's really piss d – you know, it's NOT the massage, it's just another thing she doesn't do, another reminder, they just got a trampoline, she is crazy about it, but with the compresions on the spine, she's gotta stay away, yes, it's a nice idea about the skin care, she's very good with her whole care thing. Ugggghh, I dreaded telling her, awful
Dani this is your lucky charm, being with these beautiful intelligent ladies. No, you are not alone. Wish for TAX to knock it ouf of the ballpark.
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Swess, if I were you I'd get them to question the results. I've heard that PET scans can offer false positives and light up with things like inflammation. I've never had a PET scan...all my scans are CT only. Radiologists can also be a bit gung-ho with their reports.
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Dani. I see everyone here has given you some great suggestions. At MSKCC where I go they had special ice holders for the hands and feet that they gave me. Maybe your ca center does the same. Ask your MO. You will definitely find a routine that works for you. For me I craved Chinese food after chemo. Normally I'm not a fan at all. Good luck and I hope it knocks the s-- - t out of your mets
Babs
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Jac, yes, I am getting a port tomorrow. When my onc suggested this, I am all for it. I'm very hygienic so I don't see an issue there. Also, My veins hide from needles all sizes. I end up a human pincushion, usually getting poked 5-8 times before they call in someone else and try up and down another arm. I really don't want to go through that every time, especially since I foresee having dehydration at some point regardless of how much I will try not to.
I want to thank everyone for their input, I am interested in seeing about the nail cooling items, I have had poor nail growth already, I cannot imagine how awful it may have been to go through that either.
I found out Friday my ca center fits for wigs and they have a small selection. It can't hurt to try. I'm not lazy when it comes to hair but I prefer easy over tedious, cloths, hats, scarves or bandanas might be my thing. I won't know until I do.
I am walking in my home when I can stand it, the leg pain came on again yesterday, and using my upper body strength strains my rib mets. It's not easy but I do force myself up and about my home at least once an hour.
I love you all, your stories and journeys I will tell you every time inspire and educate!
Xoxox
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Dani, the American Cancer Society also has a free wig program. Might be something to look into if the cancer center's selection is limited. Sometimes the ACS does wigs in conjunction with their Look Good, Feel Better classes. In some areas, they just have free wigs available at their offices. Check with your closest office to see what they offer.
Also... without going back and trying to find your specific comment about leg pain... Are you sure you don't have a fracture somewhere? I'm asking because, as some here know, shortly after I was dx'd with mets, I limped around on a cane for several weeks, believing the pain shooting up my leg was "normal" mets pain. Long story short... when I ended up in the ER after the pain became truly excruciating, I learned I had a fractured hip and a fractured pelvis. And others here have had similar experiences. If you haven't had an MRI to check for fractures, it might be something to ask about -- just to be sure.
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DLB, I haven't had my knee xrayed for about 4 weeks, they did a bone scan and full body CT then too. I did break a hip back in march and didn't know until one day it was over, and the ball was hanging on by a thread last month. That's how this all started. But the knee is a recurrence like my hip was. I go in tomorrow to get a port so I will bring it up. I haven't had the knee pain for about 2 months.We do know there's 3 lesions in my tibia and one I need my patella, But I also just started walking again on both legs. But then again, the rib met started going haywire last week and yesterday knee started up. I'm praying the taxotere will kick their butts!!
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Lynne, You are right that I work at a school and basically run the front office. It is very fast paced and intense. Besides dealing with parents and kids all day I do all the financial paperwork in a fishbowl. Unfortunately cutting back will probably not be allowed. Also there are not any other job openings that would give me enough hours for benefits. My husband is (somewhat) self employed as a contractor and they do not offer benefits at his company. I do have short STDI for approx 5 months and I would still receive my benefits until that is exhausted.
I guess now the best I can hope for is to take off at least the first 4 weeks until I get used to the new regimen and see how it goes and build my stamina back up. I keep thinking I would much rather resign but then again I fear I will just get lazy and languish. Sooooooo.......leave of absence for now I guess!
Welcome Dani, You have joined a great group here. I too get my first IV infusion of chemo tomorrow and am nervous but also have great hopes it will perk me back up. I get a port on Friday, a very intense week. Best wishes for your treatment!
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Artist and Dani, I will have you in my heart and thoughts as you begin your first rounds of chemo. I will be one of many of the people here who will be holding your hand to help you through.
Hugs and prayers, Lynne
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Thanks Lynne!
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This is my pitiful attempt to share the beauty of a Monarch butterfly with everyone. He was camera shy. Hopefully you can enjoy the beauty of the Mandeville!
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Artist, I can understand why your job would be stressful. I know you find it rewarding and really enjoy it, but the front office person runs the show. You must be constantly busy and often need to switch gears quickly based on what happens on any particular day. I understand why this is such a difficult decision for you. There are times when we need to put aside some of our responsibilities temporarily, even some that give us pleasure. It seems that this might be one of those times for you. It sounds like you need to concentrate on your health for now, then you can get back to the job you love. If you decide to take a leave, think of it as an extended vacation. Take this period to start your treatment and gain back some strength. You deserve that. Whatever you decide to do, we will be here to support you.
Bigbhome, the part of the butterfly that isn't hidden is beautiful, and the Mandeville is quite pretty. I love the color of the flowers. At least the butterfly is still there in the picture. A friend of mine recently tried to take a picture of her 6 month old granddaughter who had a butterfly land on her leg. Before my friend could snap the picture, her granddaughter waved her arms in excitement, and her hand landed right on that poor butterfly! Needless to say, no butterfly picture for her.
Lynne
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I still work, but I had to reorganize my life so that I generally don't have any obligation to be anywhere at any time. I just end up letting people down, which shakes my very identity. The hardest thing for me is accepting and managing my inconsistent energy levels. Front office at the school... show up every day at 8 ... there is no way I could pull that off ...
One thing I did was to start up a vacation rental and manage it. Huge amount of work this Spring (almost entirely absent from the community) buying a bank owned property, repairing it and setting it up. But it was still flexible and the work went at my pace. At this point, the job is texting and coordinating that can be done from bed if needed. Some maintenance, but only when I have energy. Keeps me engaged with people, and brings in some $ for all these bills! I get done a fraction of what I used to get done in a day ... but it means a lot to do something. There is a whole business in managing other people's vacation rentals for them ...
The problem, of course, with a lot of these jobs where you control your schedule is that they are basi self employment and that may not solve the insurance issue. ... My husband is employed with awesome private health insurance from Aetna. I cannot praise Aetna enough ... they do not question any reasonable request ....
Gracie - I am thinking of you. Concerned. I asked Wendy from this site to PM you and help you get palliative care. Whatever path you choose, you deserve to be supported with someone physically by your side. There are groups that will help. And, yes, it sucks to ask for help. Micmel, do we know how Gracie is doing?
And, DianaRose. I am just sick hearing what happened to you. Furious. Joke of a hospital. Yes, indeed.
>Z<
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I'm currently at that juncture of my life regarding work. I have been working since my mets diagnossis in April 2015. I'm a nurse, very heavy work, lots of lifting, pulling, tugging and hours on my feet. I struggled all winter and decided to take short term disability in early June. I will get paid until December 19. For the first time in my life, I am unable to do my job. I know it but the truth really hurts. I feel like I am letting down my family and my patients. But part of me is relieved that I probably will not be going back. I can go onto long term disability but it's going to be a HUGE financial hit. Will file for SSD when I need to. My husband and family are very supportive but this weighs on my mind daily.
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I'm on SSDI, and the financial hit sucks. Have to go into my savings every month, but that's just how it is. No way can I work anymore.
Artist, don't think you will languish and get lazy. There's always something to do...laundry, vacuum, etc. I do think the reason I'm doing as well as I am psychologically is that I don’t have the additional stress or burden of working. I can devote my tires to my health.
Not to be morbid, but I don't want to be in my "hospice" bed thinking, "Gee, I wish I had spent more of my Stage 4 months working than being home with my family."
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Deb, I am well aware of the physical demands faced by nurses as well as the emotional commitment that the job requires. I am amazed that you have been able to continue to work in that role this long with MBC. I applaud you for that. I understand why you would feel that you are letting down your family and patients, but I am sure they do not see it that way. You said that your family is being supportive. They are being supportive because they want you to do what is best for you and for your health. Nursing is a big part of your life, but to your family, it is far from the most important part. They love you for the total person that is known so well to them. You are not letting them down. I am sure they are proud of the wonderful work you have done in your career, but now they want you to do what is best for your future. Your patients would also not want you to sacrifice your own health to treat theirs. You do not sound like someone who will sit on the couch and watch tv. Maybe you will find ways other than nursing to help others. There are many people in need out there, and many volunteer positions available that are important but do not carry the same demands as your nursing career. First, take some time to recover and relax. Think about what you want to do that won't overtax your body. Maybe you will want to volunteer. Maybe you will want to find a creative outlet. Maybe you will want to enroll in some classes and learn something new. Maybe you will become a gourmet cook. Maybe you will just want to enjoy your family. It's all up to you.
Hugs from, Lynne
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Lynne, that was so perfectly said. Deb, I completely agree! We are such nurturing creatures, sometimes we forget to nurture ourselves!
Hugs and prayers
Claudia
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Z~ I texted her the information you gave me in PM so she would know. I'm waiting or a message back. The fact that she tries everything to keep busy makes me think she's at least moving around like her persistent self. I will keep you posted as well.
You wonderful ladies here. It's lovely the support you all shine when needed for a fellow sister. The love is wonderful. And mutual from us all. Meaning Gracie, Diana & myself. They have become more than just friends they are truly becoming sisters.
Claudia~ I love you my friend. Nan & you & Keetmom. My rocks! Hugs lovely ladies.
Sweet supportive thank you hugs to everyone for your prayers when I was panicking about my friend(S) thank you from the bottom of my heart. ~M~ And .... so if anyone has scans this week. We hold you all in prayer as well
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Lynne, your words are so sweet and made me cry. You captured exactly how things ar. Claudia, thanks to you also for your kind words. I was so physically and mentally exhausted when I stopped working that it took me about a month of just resting and getting my strength up. My husband says he is just starting to see the stress leave my face. He always tells me how proud he is that I was able to work an additional 2 years since being diagnosed. It's funny that Lynne brought up others ways to help others such as volunteer work. I signed up to volunteer at a cat rescue and have been doing that twice a week for about 3 weeks now. It's something I always wanted to do and feeding and loving on those kitties makes my heart happy. Even there, I struggle physically and I'm soaked with sweat when im finished but the people there are understanding ( I did divulge my diagnosis to explains why i cant lug the cat litter bins or 40 pound bags of food). We are already cutting way back on spending in preparation for the drop in income. Watching the sales and stocking up on things, paying ahead on some bills, limited eating out. Whatever it takes.
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Artist. At this point in time you need to do what's best for you and only you can make that decision. Remember work is just a job. You and your family are what's important. I so hope the chemo knocks your mets on it's a-s!
Bighom. Great picture. Love the colors. Thanks for sharing
Micmel. You are so right. This is the most amazing group of sisters who support us better than our blood sisters. I don't know how I could have dealt with everything if I hadn't found this site!!! You all rock!!!!!
Babs.
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Chiming in to say this group shows kindness and support for each other every day! I came for the research and stayed because of the wonderful ladies here.
The work decision has been tough In addition to the financial hardship, work was one place I could forget about cancer for a little while and feel like my former self. They didn't know and I didn't tell. It's been hard to give this up even though I know it makes sense.
There are good reasons for either decision!
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Hi Wendy! Thanks so much. I'm out in Crescent Beach - figured no-one would know where that is so stuck with the Vancouver thing :-)
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Hello overjoyed - how did the first round of radiation go yesterday? Have been thinking of you and hoping that some of the treatments kick in for you sooner than later! Take care....
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I agree with everything said. I had to shut down a business that I loved couldn't do it anymore and the time taken from my family was one of the biggest issues.
How is Gracie doing? I'm hoping she is on the way to feeling better😊
Babs how are you feeling have you started treatment already?
Vancouver I used to live in White Rock for ten years before buying a farm in the Okanagan sadly because of cancer we had to sell all the animals and farm and now I'm in the west end😊 The world is small.
My eyes have been giving me a bad time I try to read all the posts but end up missing a few apologies ladies if I don't react to all. My heart is with you all..
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It was truly a sad day, Dani realized she could not keep up with the deadlines promised in her business that she built up over the last few years. She tried keeping it local, but making an appointment with a client, and then canceling because she was called in for an urgent scan, or for a BT retake etc...was just too taxing, she packed all her merchandise and was pondering how to get rid of it fast, i got someone to get me a large car and i kinda grabbed it from her and told her i know of homes that need it, i didn't at the time, but I just couldn't have her look at the stuff. It was just another added horror to this horror.
We are at a difficult situation - Dani's RO skipped her scheduled Brain MRI because she wanted to make sure she stays at this trial, (which we don't know if it will have a positive effect yet, because a lot of things, new things even showed up at the last PET/CT) - but she needs to have one done, so it's scheduled for the end of the month, which is way longer than she's had for a long while. She has lesions in the liver and lung that is being ignored, (not radiated or a/t that could have maybe be done), all due to the trial. The rule is, nothing touched only the trial regimen is actionable. She's really freaked out that they are taking care of one thing but ignoring the whole person. Yes, they mean well, and it's a trial to see if the drug works, but the question is can WE afford to let things slide by.
We don't have the answer, also they only want to do a CT of the chest/liver/abdomen but she has tonz of lesions in the bones that have to watched also, it just does not show well on CT - for all the years she always had a PET/CT, i don't know what to do? I just can't understand if she does a PET/CT can't they just work with the CT section, and satisfy the clinical trial protocol? I placed a call to the head of the trial, we are waiting for a call back. But D gets the feeling that they are just concentrating on the info THEY need. I am not saying they are not good people but they are doing what's needed for their information. How can I be sure that she is completely taken care of?? If the trial is working we'll know only at the end of the month. At first they said they would ok a PET/CT but then they decided that not.
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