Bone Mets Thread
Comments
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Thanks everyone for your support. It means a lot to know it's not just me or I'm some kind of wimp! Terre, I love your comment about "normal!" So true.
I've been on the antidepressant 5 days now and it is really helping. My mood has lifted and I'm getting some decent sleep. That makes such a difference. It helps me keep a balanced perspective about everything. I'm glad it's working because my MO and his nurse spent a lot of time trying to get the insurance to pay for it. They finally agreed, but what a waste of people's time!
Have a great day, everyone!
Sharon
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Hi y'all. Geez Terre. It is hard to imagine you depressed. I know that dark place all too well. Carla, I'm quite worried about you. That's a lot of weight to lose, and if you can't keep anything down, you aren't getting the nutrition you need. I'm assuming you have been prescribed an anti-nausea med. Maybe you will have to do like when you are sick. (Like we aren't sick, right?) Take a tiny bite and sip of something then wait to be sure it stays down. Then repeat. Good luck to you and all of you.
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freebird - sorry you are having such a hard time.
Trying to catch up on everyone post bbl
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Be well y'all. I think my eyes are resting more than they are paying attention now. Just pleased to report that I had a great day today. I actually felt normal. It's nice to be reminded of what normal looks like.
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Carla.... Very concerned about you girl. I would like to suggest checking with your onc re these anti nausea meds....Aloxi and Emend. They are given at the time of Tx and have a great record for keeping nausea and vomiting away. The combo has had a strong recommendation at the ASCO meeting. I personally was given those meds at the time of Tx with Abraxane and Taxol......and NO nausea or vomiting at all. Check it out...your body is not able to fight from behind........poor baby. Big hugs. Peggy0
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I can highly recommend Emend suppositories - not appealing but they work. I had not one hint of nausea throughout chemo.
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Good morning all,Carla - hope you're feeling better.
Dune - here's hoping for many many normal days.
Gosh this last pamidronate infusion really did a number on me. Profuse night sweats, a very weird malaise during the night - pain in my mouth, jaw and chest - wow that was painful. Migraine in the morning and the Bid D as a bonus. Today is much much better.
Wishing you all a good day! - Linda
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Linda, that sounds awful! Glad you are feeling better now.
Anyone experienced "trigger finger" while on Aromasin? I think it's happened to two of my fingers on my dominant hand (not so handy). It hurts to straighten them and I can't close my hand at all. It's very painful. It started in my index finger a few days ago, then in my middle finger today. It gets better as the day goes on, but is still quite painful. I don't know what to think since I haven't had any musculoskeletal-skeletal issues since I started Aromasin in January. I do have osteoarthritis, but never like this. I'm taking ibuprofen and using some essential oils and Tiger Balm on it, but the pain is wicked. Any advice?
Have a good weekend, everyone!
Sharon
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Sharon - I developed trigger finger on Femara. Hurt hurt hurt. And also developed an incredibly painful middle finger on my right hand. Trigger finger in my left thumb, right index finger, right little finger. Miserable. Then it went away. No clue what caused it to start, no clue as to why it stopped (but glad it stopped). It lasted about 4 or 5 weeks, I think. I did the same as you - ibupropen, etc. I can't remember if switching to Celebrex from Ibupropen helped it; I don't think it did. I'm finding that these random side effects just seem to come and go. And it does seem random.
Hope yours goes away soon!
Terre
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Sharon, I went to a hand doc and got a shot for my trigger finger (thumb on dominant hand). It was very painful.
Linda, I'm so glad you are feeling better. That sounds like a hell of a night!
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Hi All!
Had my CT scan on Wednesday, don't have the results, I won't get them til next week when I go down to see the RO and then that day I get another CT (for rads maybe?) I don't know.... The lab forgot to do my turmor markers which is too bad because they have been spot on for me, but I'll get blood work again on Monday.
DH & I had a lovely couple of days away to Ucluelet & Tofino. We splurged & had a $70 "dessert" at the most expensive restaurant in Ucluelet! We shared one dessert which was just ok but the wine & whiskey were great!
A pic of me on Chesterman Beach, we walked for hours, barefoot in the surf, it was great but my legs were aching the next day. It was quite cool compared to the rest of BC which was in the midst of a heat wave.
Anyway I hope everyone is ok, I'll try to get caught up on the thread. Cheers, Dee
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Nice picture Dee!!!
A $70 dessert? What the heck was it?
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Dune, the dessert was the cheap part, it was the wine & whiskey that cost all the $$$.... worth it though, we really, really enjoyed ourselves!!
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Fabulous picture Dee. So glad you splurged and had a nice time on your get-a-way. You deserve it! ~ Karen
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You enjoyed yourselves, and that is what is important Dee. I'm glad you enjoyed it!
I wish I would fall asleep. Every time I sit up I see some strange bald man in my mirror looking back at me. I'm finding it somewhat disconcerting. LOL
My next Taxol treatment, which is Monday, ends the 2nd cycle; so I need to get an order for bloodwork to be done sometime next week. I see the onc the following week. This will be where we find out if it is working or not. If it is working, I think I will be on it for a while longer -- especially if I judge by the golf-ball sized lymph node erupting from about 1" below my right clavicle. It was shriveling up, but oh man, it's putting up a fight. It's one ugly mother!
There you go: you can get a look at the ugly lymph node and the strange bald person in my mirror.
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Dune - you look great. The lymph node, however, looks like a mean so and so. I have a friend who had a tumour on his forehead (long story). It was ugly, so his friends named it Camilla, after Camilla Parker Bowles. Mean, but funny. So maybe you should name it. Sure hope your next treatment goes well and it kicks that lymph node and the other stuff to the kerb!
Dee, good luck with the upcoming appointments and results. $70 dessert sounds great to me! And looks like you had a really nice time.
Hugs to all,
Terre
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Dune,
Hair comes, hair goes (of course most would rather have it). As for the node, I thought it was your port until I read further.0 -
Oh Dune, your lymph node looks exactly like my port! The nurse at nuclear imaging was showing everyone my port as it sticks out so far.
I do hope the taxol works for you with all that you're going through. ((hugs))Thanks Karen, how are you doing? Quite the heat wave you're having up there.
KCM, how are your kitties doing? I still haven't had a chance to catch up on the thread so you probably posted already, but are you feeling better? And all moved in? I just saw a picture of Cy, OMG, he's so adorable, I think you have to keep him! and I love his name!
Linda, sounds like you're having a rough time with Pamidronate. I usually feel flu-ish for the weekend, I always get mine on Friday afternoon, but by Sunday night, I'm feeling better, sounds like you had a worse reaction this time. Hope you're feeling better by now. I feel like I'm so behind on the posts, I wanted to get away for a bit, but then you don't know what's going on...
I won't be around much next week, I'm not taking my laptop with me when I'll be in Victoria for radiation. Wish me luck, I have no idea what to expect this time around, don't even know how many days I will be down there. Cheers, Dee
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Dee, for sure good luck with your radiation treatments. The ones I had helped me soooooo much.
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Hi Ladies.. yes I missed a lot too. I have been having some major trouble here.June 8th was my CT. By 630 that evening my MO called saying I had a LOT of progression. I knew I would as my bone pain was getting so bad from the bone mets. And another lesion in my liver, and my left lung has gotten way worse. Not only that but they found a blood clot headed for my heart. So went to ER got started on blood thinners. Next morning my MO wanted me there to see a blood clot specialist. She put my on Fragmen which are daily injections I give myself in the belly that stings like angry bees (they're words not mine).
I also got started on chemo yesterday. Weekly Taxol. So joined that group too. I need to update my info but have a hard time getting to say what is required. Need help with that if anyone could help.
Freebird.... so so so sorry your so ill with your treatment. Should you maybe asked your MO if you can do something else for treatment so you can enjoy your trip (awesome that your wish has been granted).
PS. love the kitty pic and flower pic. Animal lover and gardener here.
Love and hugs and best of luck to all.
Cathy
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Dune, does that node cause you pain? I'm praying it shrivels away and never bothers you again. But you are still beautiful, inside and out! Thinking of you always and sending healing energy.
Dee, what a beautiful picture, thanks for posting it. Good luck with your rads, I know you will be fine!
Linda that's strange your infusion affected you that way this time, sorry to hear that. Were you hydrating enough before and after? I find that really helps, I think you may have been the one to tell me. I get my infusions every 2 months now so I was worried it was going to affect me negatively again after not having it monthly but so far so good. My next one is June 26th. Hope you're feeling better now.
Cathy, I'm sorry to hear you had progression. Thank God they found the blood clot, oh my goodness, some good luck mixed in there. How are you feeling after your first taxol treatment? Praying it works to get all those mets knocked back. Thanks for letting us know how you're doing.
Carla, thinking of you and praying that you were able to get some help with everything going on right now. Sending you healing energy and hugs.
Hugs to all, Annie
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Dune, forgive me, your lymph node made me cry. Could it be just taken out? I know it's systematic, but for pain relieving sake, why not? (again, forgive me if I sounded ignorant.) Really really hope that your chemo is working!
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Yes Dune very sad that it has to come out like that. My lung node was so large it pressed on my worst lung and collapsed part of it. Now it has fluid in it also. Counting on Taxol to kick our cancers butt!!!Cathy
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OMG...Dune, that is some war wound!!! Unbelievable how the body reacts-positively & negatively! Does your onc say the lymph should look like that???? I just here Dorothy's nemesis saying, "I'm shrinking!!!" You are keeping a sunny disposition...aka, the bald guy in the mirror :-). Some white haired lady keeps freaking me out!!
Kiwi...LOL to the washing machine cycle...that's the best ever!!! So now I know why my pointer finger is giving me fits! I've narrowed down the buzzing-literally, it's buzzing-feeling in my hip bone when I'm laying down to femara, now the finger too???? Seriously, who knows what'll show up next.
Freebird...I lost15 lbs the first time on chemo, due to D (very quickly and it subsided quickly & lbs came back), but my onc flipped out. They brought a scale into infusion & said they'd have to adjust my chemo if I lost more weight. I'm wondering what your onc us saying. I know your sad you weren't able to be w/friends...but hopefully they understood & were able to offer some support. So glad you'll get to the OR coast. It's so beautiful & windy...take a jacket & a kite!!! Hope things turn around quickly!
Tryn...I'm so sorry about all you're going through...but, like Annie said, thank God they found the clot!!! I know it puts another lousy spin in this journey that's already tough, but we want you here & I know it's so cliche...but stay strong! I'm thinking taxol's going to do the trick!!!
Love to all...gotta get movin for the day...now that it's 11 am :-)
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Hi to everyone I'm sort if I don't address you individually I just wanted to say I'm sort for what some of you are going thru in terms of progression and SEs it makes my troubles seem slight by comparison although I too have had progression and are in pain but at least it hasnt spread past the bones and as far as the pain goes I've been referred to the pain clinic which I hope they hurry up and schedule me these drugs have me so dopey it's not funny sending all (((hugs))) and wishes for a pain free day and successful treatment
Aurora
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The lymph node does hurt sometimes, and it doesn't like to be bumped into now. However, it is very tolerable. Just ugly. When it hurts a lot I put ice on it and that calms it down. We showed the onc last Monday and she said she liked the way it looked. There's another reason not to trust her. I don't think they do surgery once we are stage IV. It's ugly as sin, but I am only bothered by it occasionally. So please don't worry. I'm still hoping for it to shrink, but I haven't heard it shrieking "I'm shrinking, I'm shrinking" lately. We will be evaluating if the Taxol is working next week. I sure hope it is.
Hug to Xavo. Please don't cry.
Cathy, that's pretty scary about that lung node collapsing your lung. The news about your progression is just plain sucky. Keep on fighting. We really do have to do that.
Goodnight all.
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Hi Ladies, Yesterday (morning after chemo) I was good. Had lots of energy (thanks to the steroids) but as the day went on I started getting the druggy tired thing. Today I can hardly keep awake so will take a nap after my coffee. Nothing like FEC and Taxotere thank goodness.Cathy
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Hi Joan, I had the same hip pain from femera. I thought it was mets. mine got so bad I was in a wheelchair. I believe I was also having muscle spasms. Once I got off it went away after 2 weeks. So yes I agree with Kiwi and believe the hip pain is associated. To everyone else I hope today brings a smile somehow.
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Sharon what did the hand doctor say. My friend is having this issue, she is quiet about her disease but I'm not about mine so we work together lol. Anyway desperately trying to help her, she can't even work as she is a scribe. Looking for answers.
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Cathy - I am so sorry to hear about your progression. Sending you lots of love and hugs.
On Sunday, I volunteered at a kitten party for a little girl who is autistic. It was magical to see her so happy, hear her laugh, and everything went perfectly. Her mom is ok with me sharing her picture; there's been an article in the news here about here too: http://www.stuff.co.nz/life-style/blogs/four-legs-good/9735255/A-girl-and-her-indispensable-cat
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