Bone Mets Thread
Comments
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Babs I'm sorry to hear this news. A friend of mine had liver mets and they went in and did an ablation. The tumour in her liver is gone and they have given her a great prognosis. Is that maybe something for you?
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Babs, I'm so sorry to hear your news. Hope they can get you on meds and kick those to the curb!!!
Am so sorry also to hear of Cristina and Stephanie. I didn't know either of them, but I do know that kind of news comes very hard now for me. I think it must for every stage four person. Prayers for their families. I think in a way I'm still in denial about this whole thing, and to hear that news brings it back to reality very quickly, and I really don't want to come back to reality. I am sure every single stage four person has had those same feelings at one time or another.
I have scans sometime this month, haven't gotten the schedule yet, and am nervous as these are the first since I got the news, and went on Femera. Am hoping and praying for good news, but will of course deal with whatever news I get.
Thinking of you all every single day.
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Babs, so sorry to hear this news... I hope they come up with a plan to blast them.
Thanks Annie, nice to see you here too.
Lynne (50's girl) suggested to me that it could be my thyroid as well. It was checked a few months back & was on the low end of normal. This is brand new to me this week, so it's odd. This morning my temp was 34.8c or 94.6f. I told them before that my hair was falling out & my skin is so dry, classic thyroid problems but they just write these things down & never say much.
take care all, cheers, dee
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I'm sorry Babs. Hope that Taxol kicks them to the curb and you can get back to stable.
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Babs - If you want to consider treating the liver mets directly, here is a list of strategies from BestBird's guide:
Ablative Therapieso Cryotherapy
HAI Chemotherapy NKTR-102 (Etirinotecan Pegol) – Not Yet FDA-Approved Radioembolization or SIRT/Yttrium 90 Microspheres (Theraspheres) Transarterial Chemoembolization (TACE)
o NanoKnife
o RadioFrequency Ablation (RFA)
It's always worthing reading BestBird's guide during treatment changes. Also, there are trials specifically for liver mets that looked interesting to me, should I have progression to my liver. Whatever path you choose, may it make short work of the mets in you liver. Please keep us informed ...
>Z<
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Babs, I'm sorry to hear of your progression. Bummer. I wish you the best with Taxol. And thanks for all those beautiful pics - brought back so many good memories.
Dee - Always nice to see you. Sorry, no advice from me. Thanks for giving us the good news about Terre. I think of her often.
Gracie - wishing you stable or better results.
Patty - waving at you - how are you?
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I'm bummed for you too, Babs. I'm so sorry. Those mixed results are just so frustrating! I'm glad other areas are still NED.
Yes, Dee, I have also been freezing this week. Sitting here in a jacket as I write this, and my hands are still freezing, even though it's 70 outside. But ever since our temps took a dive last week, I cannot get warm. I've had the heat on day and night and fires going every night. I already take a small dose of thyroid med and had that checked maybe 6 mos. ago, so I do tend to think it has something to do with our meds messing up our internal thermostats, maybe somehow related to estrogen deprivation???
Had my Faslodex shots yesterday, and could hardly sleep my rear end hurt so much last night, and it's still really bad today. Ugh. I hope it was just a bad aim (the tech came at me from an awkward position), and isn't the cumulative effect setting in already (cycle #16). Not fun being cold AND unable to sit today!
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Babs, I'm also sorry to hear of your mixed results. (Hugs)
Gentle (hug) to you, Deanna. I hope the soreness is a one time thing! I had my shots today. So far, doing well.
My MO is stumped about my numb chin (right half only) and numb right temple. We'll start by eliminating the scary stuff with an MRI of the brain and neck on the 12th. If all is well there I'll try my ENT as I have been having sinus issues-although not severe. A long shot- but worth a look. If that doesn't answer the question we'll proceed with a neurologist. Fortunately there is no pain. It's just scary!
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Deanna,
I hope your bum pain eased up enough so you could get some much-needed sleep. Some nurses are better than others at giving these shots. I had a butcher give me shots once and even after gently reminding her of the recommended method is administering them, she continued on. I hurt for days.
I believe I'm done with Faslodex based on my last scan. I'll be starting Xeloda after dd2 wedding in 8 days. Cannot believe it's so close. She's my youngest and my surprise baby. I had my tubes tied after my son was born but low and behold, I was about 8 weeks pregnant with her at the time and didn't know it. I've always been closest to dd2 because I can view her as my extra special bonus baby.
Anyway, going to enjoy every moment next week as friends and family start flying in from all parts. Just hoping a blizzard doesn't decide to crash the party.
Babs, I'm sorry too. So many of us know the feeling, unfortunately. I can only lift you up in prayer.
Hugs to Dee, Linda, Lindalou, Gracie, Kaption, Wendy, Z, Patty and the rest on this thread. I hope you have a wonderful, pain-free and memorable weekend.
Amy
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Amy thank you for the mention. Sometimes I think I don't comment enough to warrant inclusion. Thanks you , you are all so important to me. All of you. I had a very difficult time with Christine's passing the unfairness of it all. I went for my bone infusion this week and met a girl who was probably 26 with stage four lung cancer. I cried all the way home her boyfriend from high school proposed to her the day she was diagnosed they are waiting for a honeymoon till she can walk again. He owns four MJ shops so she is on that as well. Her tumour has shrunk by half and she hasn't had to have her lungs drained in a month. Also her appetite is back and she is sleeping better. Also off all other meds besides chemo.
Babs have to tried CBD? I know it's hard to know what to do next but don't loose hope. Just breathe , regroup and continue the fight. We all love you and are in this battle together.
Wendy
Hi Patty
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Wendy,
I want you to know I read your comments and think of you often. (My daughter's name is Wendi). I also tell my DH what you say about MJ- although that is not an option in KS. Nor, do I need it yet. But, maybe someday...
So thank you for your input.
I'm not great about going back and acknowledging everyone's comments, but know that you are in my thoughts and prayers.
I am worried about Patty. She is usually active on the few words games I play here. Haven't seen her since her announcement of being out of the hospital.
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hi all!
I'm worried about Patty, has anyone had a text or email from her? She hasn't been on the boards for a week.
Wendy, nice to see you. Sorry I never seem to have time for coffee when we're over your way. They always have me booked most of the day, with only a bit of time to grab a quick bite. I think of you because I did try CBD & didn't really like it. Unfortunately it didn't make me sleep like it does you, maybe I'm taking the wrong stuff?
Amy, enjoy your baby's wedding! Time to think about treatment is after.
take care, cheers, dee
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babs so sorry about your progression. I hope Taxol does the trick for you.
I am grieving Christine. I so wish the end of her life could have been easier. I will also miss Stephani's wisdom but her end was so different peaceful I believe.
Amy I am starting xeloda in 3days. My doc wants me to take b6 a few days before starting. There is mixed information from dr.Google showing this may help with hfs.
So I am starting xeloda because I randomized to physican choice not parp inhibitor. (In the embrca study) I am bummed but remembering what my first MO said. "Don't swet the individual treatment decision because the plan is to be on everything." So just not time for the parp yet.
Wishing everyone peace and love
Mary
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I too am concerned about Patty. I texted her this morning and no reply so far. Will let you all know as soon as I hear something.
Mary - wishing you the best on Xeloda!
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No problem Dee I know how it is. CBD won't make you sleep that's the THCs job. CBD I think is a bit like coffee on a much lower scale.
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Mary,
Thank you for the B6 tip - it can't hurt...right? Good luck to you too. You've probably already been told to slather on the hand lotion to keep your feet and hands well-moisturized thus, hopefully avoiding hand foot syndrome which sounds positively dreadful.
Wendy, you're always in my thoughts because if I recall correctly you had to give up your beloved horses due to BC. WELL I don't flipping care anymore - I declare that this winter I'm going skiing again and if I fall, so be it. I'm also going horseback riding again next summer and while I hope I don't get hurt, tough if I do - riding and skiing are too much fun and I'm not going to stop doing these things because of "possibilities". I think it's worse to let cancer rob of us the fun and I'm done letting that happen.
On that note...have a FUN weekend.
Amy
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Just took a look at the Patty thread. She's not feeling well (pain, nausea) and will come back on BCO when she feels better.
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thanks Linda for checking on Patty, when I looked this am, she hadn't been on BCO for a week, didn't think to go & look at her thread.
Wendy, I was taking a 50/50 blend which I was told would make me sleep like a baby.... it did, I was awake every 2-3 hours.... felt like crying.
cheers, dee
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Babs - So sorry to hear about progression! s#*!
Patty - WTH - The pain and nausea doesn't make sense if they have the C diff under control...hang in there...we are thinking of you and pray you feel better soon!
Hi Linda!
Dee - Hope you sleep better tonight! Exhaustion makes everything harder IMHO...I do get chills all the time on the Letrozole Ibrance combo.
Rosevalley...thinking of you today and praying that the NV stays away.
So many losses recently. I've begun lighting a candle whenever more news comes...I want to remember each of these lovely women.
Update - Good labs yesterday at my monthly meeting with MO (except neutrophils which were at .9, a new low :-O.
The dermatologist's office called this afternoon. The mole they removed last week was melanoma. S*$!. They wanted to refer me to a surgeon here in my town and test lymph nodes, but I am waiting to hear back from my Chicago MO. I think we need to see whether it is metastasized breast cancer or a whole new thing.
To deal with it, I started decorating the house and proceeded to fall off the ladder while working on the tree. Missed the last step on my way down. It was Chevy Chase spectacular...staggered across the family room and landed on my hip. DH was upstairs and didn't hear it. I missed the brick fireplace and nothing broke -thank God! There will be bruises. Just another stupid reminder that I really am not 100% anymore and I hate it.
ON the positive side, the tree looks awesome! Time to watch a sappy movie and get into denial for the weekend. Not a thing to be done until Monday.
Can I "unfriend" Cancer?
Enjoy the weekend ladies. Skiing and horseback riding sound marvelous! Why not.
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Kathryn,
So sorry to hear about the melanoma. It does sound like you need good information before proceeding. I occasionally read a blog written by a cancer researcher who has stage 4 colon cancer. He also developed skin cancer- but has it under control.
Also sorry about your fall. That would do me in!!
Do bundle up, enjoy your decorations, a movie, and ignore cancer for now!!
I love the candle idea. I think I'll do the same.
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Hi All,
Linda, thanks for the Patty update. Patty, if you are reading, we are all pulling for you.
Amy and Mary good luck as you start Xeloda.
Kaption, Hope you find some answers as you get scans etc.
I'm having a brain MRI the 8th. Migraines and ocular migraines are nonstop. Need to take a look. Full body CT as well and include mandibular as my jaw has been aching a lot and x-ray shows inflammation. So off all meds...no Faslodex and no Zometa until we get results of the scan. Maybe being off will help break the migraine cycle.
Amy, I'll join you skiing. Think my neurosurgeon would have a fit though!
Wishing all of you a good weekend without pain ( oh I can wish right?)
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Kathryn - S*$ is right! Ouch about your fall but thank God only a few bruises. We've had freezing rain the past few days and I stayed in, I'm so scared of falling. Enough fractures as it is. Sweet nothing to do until Monday sounds awesome. I started lighting candles too to honour the memory of our sisters.
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"unfriend cancer" I love that!!
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Kathryn, Melanoma now? Sorry. Damn cancer. Let's all have an 'unfriend' cancer party.
I have lit some candles too......
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Wow, this thread is full of happenings at the moment.
First, Kathryn, I'm so sorry about the melanoma and also your crazy fall. So grateful you didn't injure anything! Where was the spot they biopsied? Did it look melanoma-ish? Well, at least your labs were good! And I got a chuckle out of your comment about unfriending cancer. If only it were that easy!
I'm glad someone checked on Patty. I was beginning to think her absence here might have been Cristina's passing, which I know has hit everyone who knew her pretty hard -- hard enough that some have mentioned taking a break from BCO for awhile. Patty -- if you're reading at all -- I hope you feel better quickly!
Lindalou, nonstop migraines sound absolutely miserable! I hope getting off your meds will make a difference. I'm trying to remember, have you always had migraines, or is this something new? Have you ever tried peppermint oil (externally -- rubbing it on your forehead, temples and neck, as well as inhaling it)? It's one of the few things that helps my son when he gets a bad migraine.
Linda and Kathryn, I love the idea of lighting candles. Between BCO and FB friends, there are been far too many. And I hate not wanting to tell my hubby why I'm so sad, but these losses are so difficult to work through, no less share with our families. Lighting candles in their memory is a wonderful idea.
Amy, I'm so with you on skiing and riding. My onc scared the wits out of me about doing those things, and I really miss them too.
I hope everyone has a nice weekend! Stay warm!
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I am a month post rads for painful mets of sacrum & ilium- both lesions were under 2 cm
Saw my Radiation Onc on Tuesday 29th. He says the new bone scan, taken 2 weeks post radiation (18 days, first 2 were doubled due to the intensity of my pain) shows both tumors ( sacral and ileum) are completely destroyed. Nothing "lit up" on the bone scan He says it will take another 2-3 months for healthy bone to remodel & replace the dead tumor cells. He explained it was more like a 3D hole than a linear fracture and takes time to heal. He used the term NED. Yet when I read about radiation it's referred as palliative therapy. Are those tumors really completely gone?
I understand that my Faslodex & Ibrance are to prevent future recurrence, but will my cancer come back in the same areas that the original mets were or new areas? Is it completely up in the air? Will it always be bone, or could it be visceral next time?
My pain has improved. Using the Dilaudid less frequently. I was eating them like tic-tacs, every 3 hrs originally, now can make it 5-6 hrs. Slowly improving, less intense and positional now , was not positional pre-rads. Sitting makes it worse. Can't wait until it's gone. Has anyone else had sacral pain and rads with good outcome?
The new more minor discomfort caused by damage to the muscles (which were radiated through )they are getting better too- I still take methocarbamol ( Robaxin) for that. He says that will heal quicker than the bone. I had no I skin burns, used Miaderm. Radiation was fairly easy.
All in all I am thrilled with the NED part, but anxious to be pain free so I can start living a normal life.
I don't care about minor drug side effects, but this pain is the pits.
Thanks for the prayers & positive vibes.
Cat
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Amy Q: I'm another Minnesota girl...currently started on cycle 9 of Xeloda...HFS is definitely there but I'm tolerating it. I am also taking B6 100mg daily and pampering feet and hands with Udder cream. Recently I have been experimenting with some of the homeopathic foot creams in the diabetic section of the Pharmacy. I think there has been improvement with pain but it's difficult for me most days to apply anything to my feet 3 or 4 times daily when I'm working and running around doing errands !!! . When I first started , I kept Imodium handy and took a probiotic every day but the last few cycles I haven't needed it. Good luck as you start Xeloda- keep us posted !
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LindaLou mentioned ocular migraines. I've had a history of ocular migraines since my early twenties but they were few and far between. Sometime years would go by between occurrences. I have recently been experiencing them every month for the past 3 months. I've never had them so frequently. Has anyone else experienced an increase i frequency in ocular migraines?
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Kathryn - I too hate not being 100%. I hate it a lot. The best way to beat cancer, sometimes, is to ignore it. Have a great weekend and enjoy the tree. It'll will all be there to deal with on Monday.
>Z<
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Animalcrackers,
I have a history of ocular migraines too. For about 15 years. Previously they would occur usually when I saw over tired. I also had a several year break from them and they have returned recently. I had a couple of months of having more than one a day. I truly can't remember if it was near the end of my year on Ibrance or when I first started Faslodex. I'm thinking Ibrance, because I was so wiped out! I do think too much iPad time can trigger one too. Mine do not lead to a regular migraine. I just can't see well for a while. Annoying.
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