Bone Mets Thread
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dune your last raidiation treatment !!!! Hooray. ! It's celebrating time. Whatcha gonna do ! Gotta do something. Hmm. Something fun indeed.
Yes the sun felt great in my face and i plan to get some more today. It made a huge difference in my attitude. Dh and ds's are off to work : school do I will def hsvd my gun on my lap under the blanket. I will not be an easy target. Feeling stronger as long as I don't lean forward and down ( like to tie shoes ) cause there's no stopping myself i fall face forward. Now if I go super slow and really really concentrate I can do this. Getting stronger everyday. Heck every hour. Just texting this much took forever making it readable.
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Patty - so glad you're on the mend! And that you have sunshine. It does make a huge difference. I have really low blood pressure, so I totally understand the bend forward thing. Also, my MO said the Femara can cause the dizzies - I do get them from time to time. Amazed I haven't fallen over because I inherited the klutz gene from my grandmother.
My mother said I was the only 40+ year old woman she know who chronically had skinned knees and bruised shins from falling over and/or running into things. Cyclone Pam was a bit of a no-go here, which is good. Some strong winds and rain, which freaked out the rest of the country, but it's a typical crap weather day in Wellington, which is otherwise known as Windy Welly. It's chilly today though.
Finally decided what to do regarding our housing situation. When you can't go forward or backward or stand still, go sideways. We're renting a house at the next beach community down from where we are now. It's a relatively short term rental; we have to be out by mid-December. It's a funky bizarre house - was an architect's residence. So it's very cool and impractical as hell. But it's surrounded by 10 hectares of grazing land, it has a great view of the ocean and Kapiti Island (so I won't lose my sunsets), and it's the same price as the place we're in. We really wanted to buy something, but with the termination of lease looming thanks to the sales agent of the place we're in now, and with only having a 10% downpayment (Fed Bank as said 20% is required), we'd end up with a high interest rate and a smaller house than we'd like. So we figure we'll sell off as much crap as we can (the new rental is smaller), and save as much as we can between now and October, then start looking again. It's not ideal, but it will push us to save and get ready to buy, and takes a lot of pressure off of me. We take possession of the new place at Easter weekend.
Hope everyone has a pain free happy day!
Terre
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Interesting!
http://medicalxpress.com/news/2015-03-curcumin-eff...
http://www.mdpi.com/1420-3049/20/2/2728
Guess I'll get back to taking my curcumin!
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Patty, sorry about DH grandmother, but so glad you are not pushing yourself to travel. You need to take care of you.
Dune, congrats on your last rads treatment! I'm finding the discussion a few pages back of rads interesting, I'm still not sure when it's used vs not.
Terre, glad you decided on housing, that was quick! And great you still have the lovely view.
I forgot who said this, but I also get copies of all my scan reports and the chemo bloodwork. I think it's outrageous that two of you weren't told about mets to your arm.
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Readingmama, One of them with arm mets is me. I don't get copies of my reports because, well first of all, there are so many and I scared myself so bad one time because I don't know how to interpret them. I should have known to get my PCP to read them as the head of radiology once told me some things because he said "no one ever reads my report completely" Now that both my PCP & I know this, we are going to go over every report.
Dune, Glad to hear you're done!! Good on ya!
I'll be in & out sporadically over the next few days, so hope everyone is well. Cheers, Dee
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Stopping by briefly after spending the whole day in the ER -- not for myself this time, thank goodness, but with a neighbor-friend who has had some heart & stroke issues and had a weird episode this morning that landed him there again. As it turned out, he's fine. But what I took away from today and wanted to share while it's so vivid in my mind, is not to take for granted the emotional impact our health is having on our caregivers. My friend's wife has been emotionally fragile for a few weeks now, and today while we were in a packed ER waiting room, she had a total breakdown. It was very, very scary, but mostly it made me think about how much our health impacts our spouses (if we have them), or our kids or our parents. Not that we can ever take that away from them, but after my very scary experience today, I am going to do everything I can to lessen the stress my MBC surely has on my DH that I maybe don't see or think about everyday.
I hope this makes sense. I feel totally wiped out after the experience.
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Well said and good on you for helping your neighbour!
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Patty, I also meant to say I thought I would go back and read the 20 pages I missed, but I couldn't. But I can tell you must have been in the hospital awile, so I'm glad you're home and hope you are feeling a little better every day.
GG, it's great that your PCP is involved, I've not really heard of that.
I was able to get chemo today after having to skip last week due to low counts I have been very fatigued, trying to get at least 10 hours sleep, feeling like I need 12. They've decided I need to add 2 shots of Nuepogen to each first cycle.
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For stage iv people, to the best of my knowledge, radiation is used to control pain. That's how it was used in my case
ReadingMama. I think it is also used to protect things like vertebrae, since they protect the spinal cord.I had an acupuncture treatment today, my first one. I'm definitely feeling better. I'm more relaxed and not feeling like I can't wait to go to bed. I came up here at my usual time, but then I watched a Netflix show I've been enjoying. Of course, now that I'm just reading and writing, my eyelids are becoming very heavy. I felt extremely relaxed during and after the treatment, so I think I made a very good decision about this.
Tomorrow I have an appointment with the oral surgeon. I sure hope he can find the problem with my jaw and lip. Wish us luck
I rode the bike for 15 minutes. I know, it's nothing to celebrate, but I'm hoping to keep building on it.
I also got my music out. I used to love listening to music. It just sort of vanished from my life.
Be well and save everyone. I hope we aren't going to have a bunch of hangovers to deal with tomorrow. lol. I sure could have gone for a Guinness. Oh yummmm. Maybe tomorrow
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ReadingMama, I hope you're feeling a little less fatigued and that your blood counts have recovered. I was the other one aside from Dee that was not told about my arm met. It is hard to figure out how they miss these things but glad I found out before I damaged it.
Hey dune, it sounds like you're feeling much better. I am so happy the rads are helping you and hey 15 minutes on the bike is nothing to sneeze at! Good for you, I'm proud of you. Please keep me posted on the accupuncture treatment as that is something I am considering as well. More for the pain from letrozole than bone mets. Good luck at the oral surgeon, I'll be thinking of you and sending positive thoughts.
Hugs to all, Annie
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Hello everyone. I keep up with this thread every day, but have been too busy to write. Just taking a few minutes to wish everyone well with rads, recovery from hospital stay, missed mets and all the other special "fun" we have here! Also, Terre, good to have a plan about your housing situation. The uncertainty is stressful.
I just wanted to comment on acupuncture. I highly recommend it. I've experienced it many times, and it's a good tool. My cancer center offers free reiki sessions, and I have been doing that every week. It is very helpful with stress relief and even relieves pain. My center is more enlightened than some, and I was happy to find they offered this. I recommend you try it if you have the opportunity.
I hope everyone has a stress-free pain-free day.
Hugs to all. Sharon
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After yet another xray, the oral surgeon determined that I do not have ONJ. Nothing appears to be wrong, and the next step would be a neurologist. Since apparently everything is intact in there and I am pretty used to the feeling, I won't go any further with it.
The radiation must have done a good job because now I want to get out and do things. I actually put out a message on facebook asking if anyone else is interested in going to a show that will be in town.
My TM is the same as last month: too high, but at least it didn't get higher. Yay.
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Good news, Dune! Glad things are looking up!
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Kitten cuteness from my volunteer work today.
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Hi all,That's good new Dune!
Had my appt with my Onc yesterday, my breast TM went down another point to 8. I meant to question her about Ibrance in Canada and totally forgot. I also found out she will be retiring in Dec and that I will be switched back to the first Onc I had - now back from maternity leave. She was very good but I preferred the other one. I'm having so much pain and am not able to control it these days. Onc gave me a script for long lasting narcos which I started last night. I have to feel better - I'm leaving for Cuba this week end.
Good day to all - Linda
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in only one week on Ibrance numbers are down and blood counts are good! Prayers for all this is a miracle drug we hope for!
Linda have fun, fun, fun in Cuba. Myra
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good morning all. Feeling a little better today. Managed to stay awake from 3-8 last night. Yea. Finally got some much needed family time. Some friends have brought us like 4 huge loads of groceries and such. Good thing we have an extra freezer. Do thankful for great friends. Easy to pop in the oven with little to no cleanup. Ds's are on spring break next week so plenty of healthy and some not do healthy snacks. Should make it easier for all of us. Ds1 is finally getting to have his big birthday party / sleepover on Friday. He Turned 12 march 2. We had a tiny celebration at the hospital but it's all out wherever he wants time now. Def got the guilt thing going in. .both for being so late celebrating and for praying I am not only alive but better for the next big event. Ds2 bday in 2 months. Doing all easy least stuff for the party like pizza and already made cake and lots of junk. Luckily dh will be here to keep em under control when I crash out.
Dune - no onj yea ! Love your new energy level now get out there and do some fun stuff. I need details !
Kiwi thanks for sharing the pic. Kitten cuteness indeed.
Linda. Tms down again. Yea. Hope pain is relieved soon. Want you to have a blast in Cuba. Why Cuba ? I forgot if you said
Hope - hope today you are feeling much stronger. You can do this !
Gg / mowing already. Boo. Still way to cold here for that but usually would have mowed a could times by now.
Dlb - hope you are all rested up from your big weekend. Hope you have something equally fun planned for this weekend
Hi to all I missed. Love you all
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Hello to all,
Terre, what an adorable kitten! Oh my heart is melting, thanks for posting it, made me smile
Linda, great news on the tumor markers but sorry about the pain
. I'm wondering if it has something to do with the weather change because mine has been worse too and my nurse mentioned it could be related to that. I will definitely ask my onc about the Ibrance at next visit. Have an awesome time in Cuba, my good friend is just getting back from there today. She will not be happy with the -8 temp here today but at least she had a week of basking in the sun. I'm betting you'll feel great when you're there!Myra, great news! So so happy for you and that looks very promising!
Hugs to all, Annie
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Dune, sorry I missed it, yay to no onj! What do they think is causing it then? And so happy to hear you're wanting to get out and about!
Patty, we were writing at the same time. So happy to hear you're feeling better and getting some energy back. You've been through alot so don't push yourself too hard.
Hugs, Annie
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thanks Annie
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Myra - so happy for you and for all of you taking Ibrance. Quite a few ladies reporting TMs going down with tolerable SEs. Yay!Patty - it's so nice to hear you're doing better. Go easy on yourself, don't overdo it. And so nice to have prepared food - enjoy! I chose Cuba because I'm fed up of winter and have been there in the past. The beach is beautiful and it's an all inclusive. No meals to prepare, no need to shop for food etc. - total pampering for 2 weeks. If my pain is better I will consider excursions - if not,I will just crash on the beach under my umbrella and soak in the ocean.
Annie - I also think the cold has something to do with the pain. But, since the last time I went walking in the mountain (and it was freezing cold that day) 2 weeks ago, I can't get rid of the pain and getting worse day by day. I was proud of myself but am now convinced I went way beyond my capabilities. I was feeling remarkably well, so went to the very top of the mountain, 55 min walk. Lesson learned. Feeling somewhat "stoned" this a.m. as I took a Rivotril (equivalent of Zanax) for muscle spasms on top of Naproxen, Robaxacet, hydromorphone contin, plus 2 mg of hydromorphone for breakthrough pain. And had my pamidronate yesterday. So today is complete rest. My treat today is my cleaning lady coming this afternoon. The house is a total mess.
Hugs to all - Linda
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oh Linda that sounds fantastic. I hope you enjoy it to the Max at whatever level works for you. Personally I hope you get some major fun in. Life only goes by once right ? Don't over do it though we wanna enjoy this one for as long as possible. Right. Takes lots of pics. We will be jealous I am sitting with sweats on nd the heater running buts like 42 outside I
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Linda - hooray for tumour markers, boo to pain. Hope you get it under control and enjoy the heck out of Cuba. Can't wait to see pics! And you probably did overdo it a bit; I know when I do, the pain is intense for a few days until things calm down again. So, fingers crossed that you're in great shape come the weekend!
Patty - so so so very happy to hear you're feeling better! Sorry about not having a lot of family time lately - happy birthday to your children!
Myra - congrats! Fingers crossed indeed!
I did a video of one of the kittens being a goofball, as kittens are. Not great video quality, but you might enjoy it! He was being VERY fierce.
https://www.youtube.com/watch?v=IGoyEI_ZA2UHugs to all,
Terre
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Thanks for sharing your pictures and video Terre. The kittens are really adorable. I'm looking forward to more and to pictures Linda takes in Cuba. I would like to see what it looks like.
No one has shown interest in the cirque du soleil. sigh. Well, at least I don't feel bad; and maybe I can go out and do something tomorrow. Dusty is chirping so sweetly. We had the 3 year old and he went home early.
Take care.
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Hey all! I have a hard time keeping up with this thread, but wanted to wish you all well. I finished my first cycle of Ibrance with stable tumor markers. Counts are really low and I'm weak, but I have a week to recover before starting again. Anyone have any tricks for getting counts back up with supplements, food, etc? My white count is at 1.2 with .6 neutrophils and my red count is in the low 10s. I don't usually eat meat or dairy, but may have to make an exception. Feeling soooo weak and I want to get out and enjoy the weather, garden, etc.
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Hi Romansma...sorry you're feeling weak and that your counts are low, but WHOO HOO for TM's!!!
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Thanks Kiwi! Yea, I'll take stable over the constant increases the last 4-5 months
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Romansma, here are a couple of articles on increasing blood counts.
http://renegadehealth.com/blog/2013/12/30/5-ways-t...
http://www.md-health.com/How-To-Increase-Red-Blood...
And hooray for the stable TMs!!!
Linda, congrats on your TMs being so exceptionally low! Have a wonderful time in Cuba! Can't wait to see some photos. Deanna
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Thanks Deanna. The highest number for my breast TM was 21, so within normal range. Exceptionally low but was never exceptionally high. How are you feeling these days? Any news on upcoming scans?Romansma - Congrats on stable markers! and I hope you feel better on your week off of Ibrance.
Another positive news yesterday at Onc's visit: my axillary node met reduced by 20%. First regression since I started tx in Dec 2013. Also, very glad I took Rivotril today, my leg muscle spasms are much better. I did sweet nothing today and slept 3 hours this afternoon.
Linda
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Glad you're feeling better and you have reduced met, Linda!
This is a really good article, in my opinion. I don't feel like a hero, but I do feel like most of you are. That said, I think it's worth sharing with you and I hope you'll share it with others. It's a message that needs to get out there to the general public in my opinion.
http://www.huffingtonpost.com/barbara-jacoby/metastatic-breast-cancer_b_6836818.html
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