Bone Mets Thread
Comments
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I love my port too, I have a power port also, love it for ct's and everything. I wouldn't be without it. Its one stick and your done. I had one with my first round of chemo too , but had that one removed 20 years ago.
Redroan0 -
I have huge needle phobia. The idea of feeling even the slightest poke, whether injections, IV's or blood draws, is much worse than the actual act, but I can't get over the phobia. The port is a wonder. A quick spritz with numbing spray and no need to worry for even a moment.0 -
Linda-n3 - no idea how to connect the list of things we want/need to do everyday with the enticing call to lounge on the couch with my ipad.....or watch really sappy Christmas movies with the worst acting ever. If you figure it out, please let me know.....the couch and I are becoming one!0 -
Caryn, I can understand getting the giggles at Belleruth Naparstek's imagery. When I was first diagnosed I was so scared of everything coming my way that I just decided to go with anything that might help me and it did work for me. For the surgery CD, they tell you to listen to it every day for up to two weeks before the surgery. I think that's partly because the first time you listen to it, it's easy to resist it. In a sense you're brainwashing yourself by listening to it over and over. I did finally get sick of Belleruth's voice but the experience taught me that visualization and guided imagery does work for me and I'd use it again sometime.0 -
I had no choice but to get a port because after five years of needle sticks in my right arm, my veins just flat QUIT. After one particularly bad draw, I developed phlebitis all up and down a big vein on the inside of my arm. Very knotty and painful.
So I got a Smart Port -- a small power-injectable port -- and I am SO GLAD I did. In the past few months it has been used very regularly for blood draws, PET scans, MRI contrast, anesthesia, IV fluids when my liver failed (twice), Zometa, anti-nausea meds, antibiotics, pain meds post-surgery and in ER for acute pancreatitis flares, Procrit for anemia… etc. A smear of lidocaine, one painless stick, and then I'm totally ready for anything I might need. The night nurses in the hospital even administered whatever I needed without ever waking me up. That is priceless when you're sick and worn out.
I mean, WHO KNEW I'd need it for all of that? Well, now I'd say God knew! Because I would have been in a heap of trouble if I'd had to rely on my tired right arm when all of the above hit out of nowhere.
LOVE my port!
~lulubee0 -
Fran, Biotene toothpaste is good for dry mouth, and is gentle.0 -
Patsback, I'm so glad that I got my port. The first time I had chemo, I didn't have a port, and it was so much harder. The second time I had a port, and it made a huge difference. I can use it for blood tests, and even for some other procedures. They even used it when I had my hip replacement surgery. It doesn't bother me at all.0 -
I am all better. the sun and warm weather came back on sunday and my mood lifted. took dog to dog park. etc made dinner.
I have lazy bowels too. I take 2 sennacots day, 1-2 coffees, just started dried figs (costco didn't have the dried prunes). this seems to be working pretty well. on bad days I have to add bottle of mag citrate. just started Afinitor, was excited to read diarhia was side effect.0 -
FrednTan, funny!0 -
Romansma, Sometimes things lost in translation, I hope you understood that I meant bowel problems are horrible! especially on top of everything else that you are dealing with. Don't be so tough on yourself about getting off the couch. Do what you can do and relax when you need to.
Sissy and Gem, Thanks for your suggestions!
Take care! xoxoxo0 -
Fran, don't mean to burst your bubble, but I hate to tell you that not everyone gets diarrhea on Afinitor!
Romansma, I hear you on "the worst acting ever" in some of these movies. I had a really rough weekend, ended up watching a really really stupid movie with bad acting just because I was too out of it to change the channel. Lucky for me I was napping so intermittently that it wouldn't have made any difference to me anyway! One thing I DID do today was to sit down in a Dunkin Donuts (not my favorite place, but it was next to my LE therapist clinic, which I had to go to at the ungodly hour of 7:30 am!), with my day planner, and looked at my calendar. I wrote out a list of things that I want to do, that give me pleasure (cooking, art, music, reading), and a few things that HAVE to be done or SHOULD be done (chores, exercises). I thought about the options for exercise: go to the fitness center 45 minutes away, so 3 hours minimum, or use videos at home, 1 hour minimum. Easy choice, but then I put it on my schedule for first thing - mostly that consists of getting my butt out of bed, doing Lebed exercises for LE, and maybe a little yoga or quigong. Follow that with coffee, reading/writing/emails for no more than an hour, then either art or music. Then lunch and rest for 2 hours, with videos or reading. Then afternoon for chores and cooking. You get the idea. I then added a 30 minute walk with DH in the evening when he gets home, which I hope we can do. That was one of our greatest pleasures before this crap all started, and it is important to have that time to be together, share, or walk in quiet. I don't know if this will work, but the main thing is I sat and contemplated what is important to me, and tried to find a way to work those things into some of my days. I know it won't work perfectly, but maybe a couple days a week would be enough.
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Fredntan,
I just read your comment on going vegan, I think I missed it earlier. I love my steak too and I totally understand you eating whatever makes you feel good. I think for me I am still trying to find a cure that I know doesn't exist but if (and that's a big if) it makes me feel like I have a little control over this I'm doing it. So far, there is no way I can go vegan but I have added a lot of vegetables to my diet and I also eliminated any junky stuff that I was eating. I eat more fish then red meat now, but I am not giving my steak up either, I just try to buy the grass-fed stuff when I can. xoxoxo0 -
Linda - I have beautiful veins in my LE arm too, and crap veins in the "good" arm. Took them five tries to get the needle in to do my CT scan. Ended up in my hand and the injection hurt like hell! Only for a few minutes, but still. I have an extreme aversion to ports as well which my logical brain knows is unfounded, but emotionally, it's another story.
And I hear you on the "watch tv". I slept for 11 hours last night; am slowly working my way toward seeing if they'll let me work from home on Wednesdays unless there's a reason for me to be in the office. That way, I can sleep in an extra 2 hours. The fatigue is just awful. As the expression goes, I'm sick and tired of being sick and tired. I'm not sick, though..just tired. Chronically tired. My MO says it's because my estrogen levels are at about zero and that's why I'm so tired. I've tried switching when I take my meds, and it hasn't made a difference. Part of the issue is that I wake up two to five times a night and have to use the loo. Apparently that's a menopause thing too. Any ideas to help with this would be appreciated.
Anyway, enough whining...best get back to work. At least I'm working from home today so I got some extra sleep!0 -
good evening all,
I need some cheering up I'm afraid. Didn't have the best of days. Saw my onco today I mentioned before that my markers, while still within the normal range, are creeping up. Well, as of yesterday's blood work they're up again. Tomorrow I have an MRI booked to see if that lets us know what's going on, but my onco's feeling is that tamoxifen isn't working for me and he plans to change me to faslodex in January.
I know I still have a full arsenal of treatments. I absolutely know that things will be a LOT worse when it gets serious. It's just that since I started tx this is my first 'bad' news and I'm not really sure how I'm feeling about it other than I feel the ground beneath me is not quite so solid.....
Thanks for being there.
Nicky0 -
Reroan, in my experience I had a tumor flare in L4 that was caused by Tamoxifen. The tumor eventually pulled back a bit, but when the Tamoxifen stopped working the tumor had a party and started to slowly grow. It laid me flat for months, I was taking methadone on schedule, and additional pain meds to boot. I had a week of radiation to the area and started to feel better in about a month. The body does take time to heal, so only now can I tell you that I am pain free. It absolutely worked, but I cannot stress enough that you mus be kind to yourself and allow the body to heal. It takes time. But, man, am I glad I did it.
Best to you!
Scorchy0 -
Hang in there NickyJ. If it's any consolation, Faslodex isn't too hard to handle and it might be your magic bullet for a very long time.
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I was going to say something but forgot. lol
just my luck I will get the constipation on afinitor. its a curse me and my bowels have
when I was vegan and doing all those supplements it did give me a big feeling of doing something that I could control over this bitch of a disease. I am not sure if all I did slowed it down. It came back. It couldn't stop it. but I have to believe it slowed it down.
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Romansma,
Thanks for that. I'm hoping faslodex won't be too bad. With tamoxifen, the only real se I had was hot flashes, but they were quite strong, and we took this as a good sign that it was working. Now I don't know whether to hope for loads of se's or none at all!!
Nicky
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Nicky,
I hope Faslodex is kind to you and does the trick. Don't consider se's, or a lack of them, to be any indication of a medications efficacy. I have been on Arimidex for a bit more than two years with few se's and, happily, it's working.
Caryn
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Thanks Caryn!
I think I'll be better able to deal with it when I start the new tx. I don't like the wait!! This is a huge reality check for me - since dx, every tx has worked and I've been living with the illusion of NED. For the first time I have to get my head around progression and failing tx's. Being able to come here and talk about it really helps though. It's a hard road to travel; but the company's great!
Nicky
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Nicky, I hope the change in treatment is just what you need to get back to NED. Sending positive thoughts.
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started 1st treatment of taxol this morning at 7:30am. I will be going 1x a week for 3 weeks, off 1 week, then on again.... 4 cycles.
I gave in and am scheduled to get my port on January 14th. So, 2 treatments via my arm, then the port
Don't know if/when side effects will/do kick in, but so far..nothing
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patsback, hey, so did ! Or rather Abraxane, a taxol derivative. I pray we both do well,
Anita
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I start Abraxane tomorrow. Worried about it, I didn't do well my first treatment of adryamycin so worried about this one. Best of luck to you ADJ and patsback
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Best of luck tomorrow. Hope all goes well and the chemo is kind. Please post and let us know how it went.
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Redroan I just wanted to be sure you know there is a world of difference between BigRed, Adriamycin, and with Abraxane. I was given iv meds, aloxi and decadron.
Anita
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well, had a cervical MRI yesterday. No progression there (yay!) but 2 more herniated discs. That makes 3 between T2 and T7. My onco saw the report and has decided that's enough, it's time to operate. I'm waiting for him to ring me this morning with an appointment to see the surgeon. Not sure how I feel about this, except it'd be great to get the pain under control...
Nicky
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Nicky,
I hope you recover quickly from surgery. My brother has had back surgery for herniated discs. Back pain if very hard to deal with. Hope this takes your pain away & gives you more mobility.
Terri
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Nicky - sending you good thoughts and hoping the new med is the one for you and lasts a long long time. Good luck with the surgery. Good luck to all of you starting chemo as well!
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Nicky, I don't post that often but while reading I was so surprised that surgery was the only way to relieve your pain from the spine. I had a recent PET Scan and then MRI to see how far my disc from C1 through C4 had disintegrated, and it's over 50% with a herniated disc at C5 making it hard for me to move my neck and after driving the pain is so bad I pass out some times. I have cancer in T1, T10 and T11 along with L3 & L4. But the doctors are trying to find every way possible to relieve my constant pain.
I have a brace, do biofeedback and use a guided imagery tape called Sound Body Sound Mind for years that helps me with my pain, but it did get so bad starting in May that I started morphine. Now take liquid morphine three times a day but it doesn't affect my daily life being drugged up but helps with me to have a more quality day. It took a lot for me to accept that I needed to take such large levels of morphine, I actually said to the Dr. that I feel I need a permission slip to take such. But have been told that in no way will I become addicted to such because of such high levels of pain. I had him showing me slides and scientific articles on why such is so. Never once did they mention surgery. I wonder if this is because they know I've kind of reached my limit on another surgery (I'm over 25).
I wish you such luck for I know and understand your pain. I will keep reading and following this topic site to see how your surgery has helped and I hope the best recovery and fastest recovery for you in this matter.
My good news ladies is that Xeloda and Cytoxan has helped me in my bone mets in my right hip and femur to the point that I have no more pain in that area, as well as keeping my mets in lung, liver and kidney mets at the same level for the last six month with no shrinking but no growth either, so for me that's something to celebrate. Even though I've had minimal growth in L3 & L4 my doctors feel so positive with my current results. They are considering about changing me over to Tamoxifen next because I've had way too many SE's on Faslodex. Only reason we are waiting to change is that I've had a couple of pulmonary embolisms in the last six months and they say they must consider that before starting it and the only reason they are considering such is because I take Levonox injections daily.
I hope all you ladies have a Happy Holiday season and a coming year with positive results from all treatments.
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