If you are not Stage IV but have questions, you may post here
Comments
-
also I know this is weird but I was having these wicked Charlie horses on my left leg, same leg. I haven't had one in a little while but I feel like me that sort of mutated into this pain in my leg. I'm sure that doesn't make any sense...
0 -
cypher! that does actually make some sense. Sometimes when a muscle contracts really hard it can be sore for a couple of days, but I doubt that's what's causing on going pain.
Try the Loratidine (generic Claritin) for a few days and see if it makes a difference, but by all means get it checked out.
Years ago I had really bad leg cramps, so I did some research to find out how to avoid them. Turns out I was low on calcium (post menopausal), potassium, & magnesium, and I wasn't getting enough fluids. Dehydration will definitely cause you to cramp.
Paula
0 -
Cypher my original dx was 2003, mets 2009..........10 years with the beast and a few weeks shy of 5 with mets. Yes I was node negative but on reading my original path report at a later date I found there was LVI. I had such a bad reaction to chemo and Tamoxifen I was not on any meds in between at all so I was not surprised when mets were found.
Hoping for you that your pain is indeed meds related.
Love n hugs. Chrissy
0 -
thanks Chrissy. I appreciate it. I really admire how positive you sound!
0 -
it's too early to tell for sure but that claritin seems to be working. At least it hasn't bothered me as much today, though as I said it bothers me more at night.so that's a good sign. Or does claritin also help with the pain from bone mets?
0 -
Cypher I doubt very much that Claritin will help with the pain of bone mets as it is an anti histamine not a pain killer.
I am very positive that I will die one day and in reality I still don't know when that will be just like everyone else so life goes on.......yes there are a few changes and disabilities that have slowed me down but I still enjoy life as it happens.
Love n hugs. Chrissy
0 -
I don't really understand why it would help with arthritis or tamox pain either! But that's reassuring, presumably if that helps anybody with bone mets you would know about it!
0 -
Hi. I was diagnosed April 2013 Stage 3 with 2 lymphnodes positive on scan. Had chemo and rads before DMX on Feb 17th. I started on Tamoxifen. 2 weeks into taking it my tailbone got achey but not painful. I saw my GP Thursdsy and had Xray which showed something on Left Sacral Alar S 2,3. I am next having an MRI. I have a little numbness in one arm and a bit in my foot. Pain is not worse at night. Any ideas beside Mets? I am ER and PR positive
0 -
Hi lindacam, the 'something' sounds a little suspicious but the numbness on the arm and foot could be anything. Mets rarely if ever go to the feet and the same for below the elbow on the arm. You didn't state where on your arm was numb so the above is just FYI.
Hoping that the MRI results are all good.
Love n hugs. Chrissy
0 -
My physio wrote to my onco stating my problem with bone pain and back pain. My apt is on Monday and I really want to push for a bone scan just to put my mind at rest. If it's all clear then it must me neuropathy not sure of spelling. I can't carry on like this they will need to send me to a pain specialist. I will be strong and really push for them to investigate.
0 -
Ali you do need to deal with your pain and a pain specialist is the right person to see so regardless what a scan may show I would insist on getting a referral asap. I hope your onc is amenable to ordering a bone scan for you.
Keeping my fingers crossed for you.
Love n hugs. Chrissy
0 -
Cypher, tamoxifen is a histamine. That's why Claritin helps to combat the bone pain. It's an anti-histamine. I don't think it helps arthritis. I take Tylenol for that. I'm 63, and have had degenerative joint disease since my early 30's.
I still have some stiffness after sitting or lying down, but just walking through the house alleviates that. I thank God and whoever on this forum told me about Claritin. It also works for the bone pain associated with Neulasta.
Paula
0 -
thanks Paula, super helpful. I didn't realize that. I guess that would partly explain why I've had so much more achiness in general since I finished chemo. I am going to wait until tonight to take my next dose of 24 hour claritin since the pain is worse at night. I think it could also be sciatic pain, so of course it could be worse because of something happening further up that is scary.
Ali i agree you should push for a bone scan. why do you think your oncologist won't order it?
0 -
Soteria and anyone else who was asking about tamoxifen: it is a histamine antagonist, meaning that it binds at the histamine receptor, much like the antihistamines you mention. It was studied about 20-30 years ago, and it appears to block a different histamine receptor than the ones we use for allergies, like Claritin, etc., but I have looked into this and found no evidence in any of the pharmaceutical literature or medical literature that supports the use of an antihistamine to treat SEs of tamoxifen, and the concept that both are anti-histamines would make me think there is a reason there is no evidence for its use. However, that being said, there are a lot of mechanisms of tamoxifen that we do not understand, and if Claritin or other OTC gives you relief of SEs, I say go for it! We are all genetically unique, so even though something has not been "proven" in the medical literature, there may certainly be a role for some "unproven" therapies for the individual patient.
Cypher, pain that results from chemo can be very long-lasting, even a couple of years out. The damage that it can do to a nervous system takes a long time to repair, and so some of the pain endings in bones and muscles can be hit, just like the nerves in fingers and toes, so be patient with yourself, do things that will reduce the pain (rest, warm baths, meds as needed). Sometimes this pain can be difficult to describe to the providers.
Getting a good pain specialist and/or palliative care specialist on your team can make this journey a lot easier; not having one can make it nearly impossible. My first PCP and MO were of the opinion that I did not NEED palliative care (remember, there is a HUGE difference between PALLIATIVE and HOSPICE (END OF LIFE) care - palliative care is to manage symptoms and quality of life issues!), so they are no longer on my team. The first 2 years of my journey were pretty much pure hell because of them, wish I had gotten my second opinion before I progressed to stage IV, but am very grateful to have the team I now have, who pay attention to MY needs, not what is recommended for "everyone."
0 -
Linda, thanks for all the info and sorry to hear you have had such bad experiences. We really do need to be our own best advocates.l
In terms of pain from chemo, this is new pain -- if it were from the chemo does that make sense? It could be generalized damage from the chemo, or it could just be my sciatica, which I have had problems with in the past -- perhaps I did something to trigger pain there. Or perhaps there is something scary happening higher up.
So I have an appointment with MO on Friday. I emailed him last night to say, can you please put the referral in for a bone scan b/c there is always lag time between the referral and the appointment. We can always cancel it, I said. He replied that he didn't want to put anything in until he saw me; he doesn't want me having too much radiation. Which is beside the point since I said we could cancel the referral. Also, from what I have read the excess radiation is very unlikely to cause a problem. Not that I would do this right and left but I had a bone scan in 2/2013 after finishing rads. If there were, God forbid, a problem, it is much more likely now than 3 months PFC.
Any ideas as to ammunition to argue with him if he says no when I have the appointment? Or to lobby him more now? Or should I lobby for another test ? It just seems like if I have an MRI and it finds more arthritis, it won't tell me anything I don't already know. (I already know I have arthritis.) Or will it? I've never had a PET scan, I don't have any concerning symptoms that suggest anything other than bone problems, but as we know all too well this is a sneaky disease and I feel like 1 year 4.5 mos PFC is a good time to check in....
Thanks all and sorry for the novel. Unfortunately it is all too apparent from being active on bc.org that we cannot place too much reliance on our doctors.
0 -
Hi, well I had my apt today with my onco and she said she got a letter from my GP and physio. Long story short she agreed to the bone scan and also talked about Tamoxifen. She said if scan was clear then the next step was having a two wk break it. So I have an apt on 24th march to get the results so at least I'm not waiting long.
Linda , how are you my old friend xxx
0 -
Ali, glad to hear from you, thanks for the update! Hope the bone scan is clear. That tamoxifen can be a bit difficult - not gonna do the "woulda, shoulda, coulda's" here, but I wonder if I had been able to tolerate it if it would have kept me from progressing so soon. Will never know. I think of you and your daughter and family often, and hope things are closer to "normal" than they were a year ago. And I do hope this bone scan keeps you there!
In any case, I am hanging in there, one day at a time, finding moments of beauty and joy each day. Winter may try to return a couple more times here soon, but overall, I think we are heading into some nicer weather. So sorry our northeastern storms made it all the way across the Pacific to the UK - it has been a tough winter for most of the Northern Hemisphere, I think! So today I walked around a small garden that I want to help a friend turn into an herb garden that will give her pleasure - she is blind - so we need herbs that smell and feel good, and they have to tolerate dappled sun. It is a project I feel very passionate about - she has given so much to so many, and now I think she deserves a little garden that she can really enjoy without having to depend on someone describing it to her. And being able to help someone else gives ME great pleasure, so that is the selfish motivation.
Cypher, your NEW pain does NOT sound like chemo pain, especially since it has been a year and a half(?) since your chemo. I would definitely push to get SOME type of study - bone scan or PET scan (they usually do PET/CT, which shows any area of tumor activity AND shows where it is). The problem with PET/CT is that there are false positives, and when my scan showed some lesions in bones, the MO requested MRI because that is more specific or sensitive (I can't remember which). I can't do contrast CT scan, which was another option. What I am saying is, there are several options for imaging, and it depends on who is doing them and who is reading them and how comfortable they are with each one as to how sensitive it will be in picking something up, yet not overly sensitive to give false positives. So I would rely on your MO and local experience to see which would be best for you.
0 -
Linda, thank- you for all your advice. Your help with the herb garden sounds like a wonderful project. I have mint growing in my flower beds that is spreading. I pull it up like weeds after a good rain. Love the way it smells & garnishes, but really do not use it as much as I should.
Paula, I finally bought the generic Claritin. I am keeping my fingers crossed, the joint & bone pain from the Arimidex is dragging me down. I will let you now if I think it is helping soon.
0 -
Holeinone, are you able to get out and exercise at all? My MO started me on letrozole last year, and it worked in combination with Afinitor for nearly 10 months, and for the first several months I had little pain because I was exercising like crazy, per the MO's instructions. Then I had a set-back and couldn't get out to walk my 3 miles, and after that, pain started. I never did get back to my 3 miles, but WAS able to get the pain under control when I was able to get back to more activity. So I am wondering if the same would help with the Arimidex. Much easier said than done, however!!!!! I have heard several women get some relief with Claritin, still don't understand the mechanism for that, but who am I to argue with success???? Also found long hot showers helpful!
0 -
Linda, thanks (and ugh). The garden sounds lovely, and what a nice and healing thing for both of you.
ali -- glad you are getting your scan and good luck!!! A question though -- is the tamox break to rule out anything that might not be showing up on the scans? Or is it because of the pain? I would be very reluctant to get off the tamox b/c of the SEs. I was HIGHLY er/pr+ and as you can tell pretty terrified of a recurrence/spread. (Aren't we all....)
0 -
Linda, I hear what your saying about Tamoxifen and that's why I have kept with it. Onco said if I stop for two wks and my pain gets better then we know that's what's causing it. My problem is I need to find a drug for pain that won't make me spaced out, bung me up, no weight gain, no other horrible SE. My back is very weak and just bending to pick up a shoe can cause my lower back to click and the pain is terrible. I can't do everyday things without pain and discomfort.
0 -
So I emailed MO and pointed out the amount of time that has passed since I finished chemo, had my last bone scan, finished Herceptin, etc. He said he would be glad to discuss the guidelines for monitoring BC during our appointment. "We can discuss your point of view as well." Wtf??!!! Not just venting, it does look like I may well need to push for this and will need ammunition....
0 -
Linda, before starting on Arimidex in August! I spoke with the nurse practioner at my MO's. She said, they aren't sure why Claritin helps with the bone pain, but they've seen it work often enough to know it does.
Some people also have fewer SEs with brand Arimidex as opposed to Anastrazole.
Paula
0 -
i found out about claritin during neulasta injections, my friend in the 'hood told me about it. i would see her take them with her when we would get ready to go some place. i will try tomorrow, and see if that helps for estrogen blocker pain on me. in 8 days, it will be a year since she passed, 25+ years.
0 -
Cypher - the guidelines your onc is referring to indicate that routine scans for early stagers **** in the absence of symptoms **** has been shown to offer no survival benefit. The emphasis on absence of symptoms is mine. In general, having a personal history of breast cancer, especially one at high risk of recurrence, and symptoms like bone pain, pulmonary issues, neurological problems, etc. should raise red flags and be investigated more thoroughly than you would for someone who hasn't already had cancer.
0 -
my mum is 14 months after her diagnosis with brain, liver, lung and bone mets. I didn't think we would still be here. All mets are stable except for the liver which is growing slowly. But chemo carries on as it is keeping everything else in check. So its good.
Is there anyone here who has survived long term with mets in many places, including brain?
They have only scanned her brain twice so we really don't know what's going on there...the doc prefers not to, says they judge it by symptoms.
Good luck all x
0 -
hello ladies, i had mx on my right side. my left fingers been sore for 3 weeks n always sore more at night. it seems to get worst now. so two days a go i noticed my left shoulder and antecubital kinda swollen n sore. i took aleve didnt seem to help. what could this be? i just called my mo office, still waiting for them to call back. thank you!
0 -
Hi Soriya glad to hear that you mx is all done and you are on the road to healing and that is always a good thing. Your left shoulder pain could be bursitis but my curiosity about which fingers in particular are sore/numb? The reason I ask is that depending on which will tell if the pain is coming from your neck/shoulder or elbow.
Anyway, when you see your doc it will be worth mentioning it to him as he may well have a very simple explanation for you. Good luck!
Love n hugs. Chrissy
0 -
chrissy my fingers feel really sore at nightespecially when i am a wake in the middle of the night. in the morning it sore n stiff but the soreness is no as bad as at nite. my shoulder and fingers feel sore all day long. also sore around my wrist too.
0 -
oh chrissy all my fingers are sore. my thump is not that bad.
0
