Bone Mets Thread
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dune - thinking of you. I agree drink drink drink. Flush that stuff thru. How are you today ?
Jobur - that sounds like an awesome nitewith your dh
Terre - aww cute car pic/story. Love it !
I am doing good again. Last night started having enough pain to sideline me around 9pm. That's awesome. A full day of relief. Woohoo !!!! Going to try and get a few things marked off my to to list today. Just haven't got motivated yet. Wish I liked coffee about now I could use a dose of energy.
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Jobur - thank you for your kind thoughts. That's really a bummer to have progression when feeling good - such a tricky disease. Yes, Falsodex is available here and it certainly is on the menu to discuss this with her. How are you reacting to Falsodex - any SEs? I sometimes lurk on that thread and some of our sisters are doing quite well on that. Bone scan went well but they told me 5-10 working days to have the results. Sigh.
Linda
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Oh my goodness Linda. That - uh - really makes no sense to me. If she has no faith in the treatment then she should try a different treatment. Maybe there is a protocol they have to follow. I'm just going to hope there is no stinking progression, and join in the singing of "the waiting is the hardest part," and drink, drink, drink -- as soon as the fullness of all the junk I ate this morning passes. I have the water next to me though.
Must run to the drug store and will catch up later.
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I went for taxol number 6 today & chatted to onc about my new pains & she's convinced it's the taxol working. She told me when she first started prescribing it she sent a number of patients off for bone scans when they complained of new pain, but all was positive. She was very happy with her physical exam of my breast, tumour is disappearing & skin lesion small & not looking bruised anymore.
I could also tell her that a month after my second zoladex implant, it seems chemo pause is complete - haven't had hot flashes in nearly 2 weeks & night sweats are over too (crossing fingers!
On the down side, nurse had to try 3 times to find a willing vein fit the drip! And I don't like needles at all!!
Have just taken a purata & now off to bed as I learnt the hard way with first few treatments, the cortisone kept me wide awake.
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dune- you sound pretty good. how are you feeling ? thinking of you.
good morning all. my ds2 is home sick from school today. He never misses school so I know if he is wanting to stay home he must feel miserable. No fever or vomiting. I really think its allergies. I don't like him sick but I really really like to be able to wait on him hand and foot and snuggle him up. Feels like I am sick or in pain so much the whole family lives seem to revolve around how mom feels. I hate being the cause of missing fun so I am glad to be the mom taking care of him. So glad I am off to another great day. For a while I really wasn't sure things were going to get better. My brain fed off that thought and I had some really bad thoughts. Amazing how being pain free ( well not free but less enough i can deal with it) can change our whole attitude. Chronic pain sucks ! Better physically = better mentally. so I want to encourage all of you who are really going thru alot now to hang in there. have hope that it will get better.
hugs to all
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Patty, Sorry your son is ill, but I'm happy you are feeling good enough to pamper him a little. You are so right about how our minds and bodies are connected. It also seems to work the other way, when we are depressed we feel worse physically too. Glad you are off to another good day.
LindaE, Have only had the 1st loading dose of Faslodex so far. SEs seem pretty much like when I first started Arimidex, hot flashes, nausea, poor sleep. Muscle soreness in the butt cheeks for about 3 days after the first shots. Not too bad, but I am missing those little white pills every morning. Still obsessing over whether or not I changed treatment too quickly. Was really hoping to get a couple years out of Arimidex.
Yeesh, 5-10 days for someone to read your bone scan? Does it always take that long? You are starting to make a believer out of me regarding the down side of national health insurance. Does the quality of care seem to vary between provinces? Crossing my fingers that your wait time is closer to 5 days and you get good news.
Dune, How are you feeling today? Hope you are getting some good rest.
Hi Karz, don't remember seeing you here before, welcome! Glad to hear taxol seems to be working well for you. So sorry about the 3 pokes, that hurts! Has that been an ongoing issue for you? Nice that you are getting a break from the hotties (flashes) and especially those damn night sweats. Hope it continues for you.
I have an appointment with a new primary care physician this afternoon. Trying to get my ducks in a row as to all my non-cancer issues/questions. Fingers crossed that she will be competent and a good match for me. We don't get seem to get the best docs out here in the boonies.
Hope everyone is having a good day.
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Patty - Keep those good news coming. It's so encouraging.Jobur - It's not unusual to have those kind of delays, it's happened before. It really sucks! And yes, it varies from one province to the other. A lot of Quebecers are on waiting lists just to find a primary care physician. If you have one, keep him even if you don't like him because good luck to find another one. Our new provincial government from one year ago is making even more cuts. Because of the shortage of primary care physicians, the ERs are totally overloaded with minor conditions that could be dealt with differently. It is not rare to 24 - 48 hours waiting time. I broke a wrist about 4 years ago and waited 30 hours to get a cast. And all medical facilities have a notice "No verbal or physical violence will be tolerated". People are so frustrated. In terms of quality of care, it's very good providing you get in the system. And now because of more budget cuts, some docs are going in private clinics or moving to another province. In fact, all this has been going on for years now. The last time I brought my late husband to the hospital 6 years ago, he was terminally ill and remained on a stretcher in the ER for 12 days before having a bed. I literally raised hell and stirred shit (sorry) while they all tried to "calm" me down. His sister came from France to be with us and she was so appalled, not to mention how sad she was to see her brother treated that way. And some tx available worldwide including other provinces in Canada for stage 4 cancers other than MBC have been cut because of the cost. Anyway, I better stop. Can you tell I'm frustrated?
Good luck with your new doc today. I hope it's the right match for you.
Linda
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jbur-You're right, an increase from 2 to 3 SUV doesn't sound like a lot , but my MO pointed out that we have been looking at this spot for 7 months and it is not decreasing so that is why he thinks radiation might help. I will find out more from my RO appt. netxt week. Thanks for thinking of me!
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lindaE54, I did not know things were so bad in Canada. I know there is a problem, living in South Florida, many Canadians use our healthcare system during the winter while they are here I know there have been restrictions lately though. The way your husband was treated is abysmal. Hope you get good results in a reasonable amount of time Myra.
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hi Jobur, I still read more than I post :-) but thank you for the welcome.
Winter is setting in here & i feel the cold & my veins do go in to hiding! Doesn't help that after all the chemo the past few months they are hardening up too. The nurses at the pathology lab have complained the last few times I've had blood drawn but this is the first time my onc nurse has battled.
I promised to arrive clutching a hot water bottle next time in the hope of presenting better options!!
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Thank you Myra - I got carried away this morning! LOL But our health system is pathetic. Having said that, I'm fortunate to have a good Onc and medical team (ortho and radio-onc). The waiting is hard but I guess not so bad in the whole scheme of things here.Kartz72 - We're having a very nice spring and can't wait for our summer to come around. Stay warm!
Linda
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I have a question for my bone mets sisters.
I appear to have had these mets going on about a year now. I have not noticed any unusual pain. They are sprinkled throughout my spine and other places (haven't seen a picture of it yet).
Yesterday and today I felt a really odd pain in one of the vertebra in my back. Same place, same pain. It's not the same pain as the degenerative disc disease or the arthritis.
When you started feeling bone pain, how did it manifest itself and what did you do about it?
Thanks in advance for any and all replies.
JJ
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JJ, my first bone pain came in my left shoulder, the scapula. It felt at first like I had slept on it weird, then I started wondering if there might be a hairline fracture. It was 3-4 months later that I realized it had metastasized. Sometimes the pains are sharp, where I think I've broken something. Other times it is dull and throbbing. I had gotten the scapula x-rayed, but nothing showed up. When I thought I broke my sacrum, they did x-rays. Showed nothing but mets they knew were there. They did end up doing radiation in the pelvic area, so I put the cane away again. Basically, though, I contact my oncologist and get it checked. I don't want to be breaking a hip or be made immobile if I can help it.
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Went to my bimonthly appointment with my oncologist today and I got the results from the PET scan and they're not good she said there are more lesions now than from the previous PET a year ago she had already switched me from Arimedex to Exemastane because the TMs kept rising I've also been in a lot of pain inspite of taking 50 mg of Tramadol three times a day she ordered Vicodin but the insurance is dragging its feet between the pain and the hot flashes I feel miserable
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I'm sorry to hear of your results auroaya. That's never the news we want to hear. Is there anything your oncologist wants to do differently now? For me, it's the worst when TMs increase and more mets appear and she doesn't change anything in the treatment.
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I'm sorry to hear of your results auroaya. That's never the news we want to hear. Is there anything your oncologist wants to do differently now? For me, it's the worst when TMs increase and more mets appear and she doesn't change anything in the treatment.
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enjoy your Alaska trip, hope-we visited back in the late 80's. We were not salmon eaters until we visited Juneau. One afternoon wecaught a van on the corner of Main Street which took us up the mountain to an all we could eat salmon bbq.back then it was $15 per person....today it is twice that. That experience changed our position on eating salmon, course it is never as good anywhere as it was there, but the whole experience was amazing...
Have a grand time, and safe travels
http://www.bestofalaskatravel.com/alaska_day_tours/pages/j_gold_creek_salmon.htm
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auroaya, I'm so sorry about your PET scan results. Hopefully the change in meds to Exemastane and Vicodin will make a big difference and get you back on the right track!
JJ, most of the time my bone mets pain can be described as aching or burning more than stabbing. I once heard a pain doc (on XM Dr. Radio) say that mets pain is often felt and described with a wide variety of adjectives because it can literally take many different forms because it affects nerves and travels. I've also noticed that when I'm worried about progression (which is hard not to do when you have a new pain), the pain seems to intensify and totally supports my fears. But as soon as I'm told things are stable, the pain goes away -- probably b'cuz it wasn't mets pain to begin, but maybe more like a strained muscle or other routine kind of pain that we are still susceptible to having. I guess the bottom line is, if the pain sticks around for a couple of weeks, get it checked out. But the pain you're describing sounds like it could also be from something like sleeping with your head or neck in an odd position. Hopefully, that's all it is.
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Hi all,
Hugs to auroaya and others getting not great results. And high fives to those who are getting good results.
Nice to have another southern hemisphere person here to whine about winter with!
I am still really sick from this stupid tonsillitis, strep throat, ear infection, sinus infection, etc. Whatever it is, it sucks. Went back to the doc today and got a new antibiotic. He wants me home, warm, and sleeping through Monday (it's Thursday here today). I have completely lost my voice. Very frustrating. Sorry to whine..this is so totally nothing compared to progression, chemo, etc. But it is making me feel pitiful and pathetic and whiny. And tired. Bought a vapouriser and hoping it helps; doctor said steam was the key to success.
Jobur - no worries on not being a cat person! I like all animals, but I know they're not everyone's cup of tea. That said, Ritz is adorable with his new mom; it's so cool when children and animal who both are having/have had a rough time find each other.
Sending hugs to all...especially to those of you facing more changes in treatments.
Terre
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PS---Patty, it's WONDERFUL to hear you're feeling better. Chronic pain really does a number one one's psyche. Glad you pushed through it and have found some relief.
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I am totally nerdy enough to love this:
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Aurora, I hope they can stop these lesions from popping up and get you some effective pain control. Patty, glad you are feeling better. No pain is plenty gain.
Linda, how horrible about your DH! I won't complain anymore about the red tape we sometimes have here. Like having to wait weeks and weeks for physiotherapy. Sending positive scan thoughts.
starbrightlyshines, I think radiation will be worth it because 1) the cancer may have been sensitized to it by Femara 2) given the disappearance of other lesions, the remaining one could be weakening and the increased uptake is actually a tumor flare, the survivors will be finished off with rads, 3) sometimes people have an immune response to the rads-induced dying cells and wider cancer fighting takes place. I have an active imagination so this is just my 2 cents' worth based on my reading. You can switch to A/A after seeing the effects of radiation. Also it would be good to know how much radiation is planned. Good luck on your appt.
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JJ - My first pain was the pubic bone - throbbing and stabbing in lower abdomen and groin and leg - had rads which helped. Iliac and sacrum - same and had rads. Rib - more like dull aching pain, sometimes throbbing. It constantly changes.Aurora - so sorry about your progression and hope this new tx works well and easy on you. And I hope you got those pain meds - I have learned to stay ahead of the pain and not chasing it. Good luck, my thoughts are with you.
Dune - how are you feeling after your first chemo?
Terre - rest well and let yourself be pampered- healing vibes coming your way.
Hugs to all - Linda
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good morning all! JJ, my mets started as a pain in my hip. This pain had been coming and going for years, but I thought it was from exercise. I never had pain anywhere else but those sneaky mets were there all over my spine. Still to this day, my pain is tingly, achyness, the only way I can describe it.
Terre, warm water throat gargles help a lot. Another of those "old time" remedies that has made a comeback.
1 glass warm warm, with salt and 1 aspirin. Mix well til dissolved and gargle. Make sure not to drink it. Do this 3-4 times per day. Helps the pain.
Have a good day all! Myra.
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auroaya - sorry sbout your pet scan results. Are you going to stay in the same tx ? Didn't you say you recently changed ? I hope they get the pain under control. Please don't hesitate to call your dr if this pain med doesn't do it for you. We really shouldn't have to be in so much pain.
Terre - bless your heart. I hope you get well soon. Your dr had some good advice - jump in bed and cover your head Til mon
Dune - I see you posting but don't see how you are doing ? Feeling good ? I know the 3rd day can be a bugger.
Well ds2 is back to school today and ds1 has an early dr appt today. So I'll pick them both up early from school. How crazy for me to get so excited over doing something so small. It's just a physical. But I haven't got to do these things in like 2 years. Dh has had to do nearly everything. After dr appt we also have an eye appt for ds1. Then maybe some icecream. I bet they'll love that and I certainly will love watching them smile. It looks like it's also time for some new summer clothes for both ds's and myself ( all my clothes are way to big for me ). Not sure I'll try the clothe shopping today though. Maybe sat am. I don't want to overdo it and then spend the rest of the evening in bed. Nope not this time. A little at a time. Enough rambling about me
Hugs all around. I hope everyone is finding something to enjoy about today.
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I was thinking yesterday morning this thread had been a little quiet, no so much today, yikes!
LindaE, Wow, don't know what to say about your health care system in Quebec, sounds absolutely awful. I'm glad at least that the care is good when you finally get it, umpteen days/hours later! The (lack of) care for your terminal husband must have broken your heart, I'm so sorry you both had to go through that. Glad you have an MO and RO in place that you have confidence in.
StarShines, If there is just the one met that keeps showing up, rads does sound like a good option. Out damn spot!
Karz, I usually lurk more than post too, though lately I can't seem to shut up, ha ha! Wish I could send you some of our beautiful spring. Heck, I'd even be willing to loan you my very excellent vein if you promise to return it! Try to stay warm. What is winter like in South Africa, temp wise?
Aurora, so sorry you have had progression and are feeling so miserable. Have you discussed with your onc what your next tx will be? Do you have only bone mets, or others as well? Can't believe the &@#!! insurance is dragging their feet on something so common as Vicodin, yeesh! Hope you get your rx filled and are feeling better soon.
Jean, my met pain is usually in the same place (lower back) and is more like Deanna described, kind of a burning numbness that escalates through the course of the day. I have done a lot of physical work in my day and it is not like other back aches I have had from strain or overwork. Before and for a few months after my dx, I also had a much more intense searing pain from my shoulder to mid back when I reached out with my left arm. That one felt more like when you tear a muscle, and seems to correspond to a persistent met on T7 pedicle. Thankfully, that subsided after I started treatment. The met is still active but the pain went away. Sorry, maybe TMI. Pain can be hard to describe and I have certainly had a lot of different ones come and go since dx, so I just worry about the consistent ones.
Terre, Rest and get well!
Patty, I never get tired of hearing that you are having a good day! Big hugs to you.
Hi Deanna, always nice to "see" you.
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Thanks for the nice wishes everyone. Myra - thanks for the "recipe". Have been doing the warm water/salt gargle thing. Will add aspirin.
Patty - I am so thrilled you're having a good day! Ice cream with the kiddos sounds like a grand idea.
Sending hugs to all,
Terre
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jobur and patty I only have mets in my bones my onco had already switched me from Arimedex yo Exemastane (Aromasin) based on the tumor markers rising so we'll stick to that one for now. The Vicodin was finally approved and I got some relief but like you said I have to get ahead of it. This is really the first time in two years that I felt "sick" while I was on Arimedex I felt stiff but almost no pain I'm trying to stay positive but I had been hoping to meet NED and instead progression 😢 oh wel
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Patty, glad to see you are feeling much better, hope your energy continues.
Dune - ironic, I've only had IV chemo and sometimes forget that is not what everyone has. The port is a lifeline for me as my veins were damaged enough the first go round.
That said...My PET scan came back and I have progression in my lung lining but sternum and liver still clear. Will stop Gemzar and move onto either Halavan or Xeloda. Not sure which too pick first. More scared of Xeloda Hand foot syndrome, esp with summer coming up and my travel plans. Too bad there is no crystal ball to see which SE you will get and how bad they will be
. I have not heard not to eat salads, I have one almost every day. Made at home, not at a salad bar, but was not told this. Haven't had any issues that I am aware of.
Cheers,
Meegan
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thanks Jobur, would love to take you up on that offer of a vein ;-)
Winter here is relatively mild - nights can go down to around 0 but days are sunny & clear & up to mid teens/low twenties Celsius. Central heating does not exist though so buildings are freezing in the mornings! I've literally been able to see my breath in my bedroom in mid winter!! Only lasts 3 months though so small price to pay for long summers :-)
Question to all - who has zobone IV without chemo? I've just had my 5th monthly IV & it's been with chemo throughout. Am blaming it for my general miserable state once a month. No more pms with zoladex so got to be grumpy for some reason ;-)
Just want to know if it gets a bit easier when it isn't combined with chemo. I'm aching all over...
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