If you are not Stage IV but have questions, you may post here
Comments
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Racy,
I have back pain since Monday. I felt some soreness while working and it got worse by Wednesday (on Tuesday I did not work). It was really bad for two days, mostly with bending, changing positions in bed, getting up from bed or getting up after sitting. During those two days I tried everything: advil, tylenol, muscle relaxants, naproxen. I did not get any relief, it was still very painful. Wednesday morning was worse, I even thought of going to ER, I wanted to cry just by trying to put my stockings on, sitting on toilet or when bending to wash my face over sink. It was never sore with laying down still or sitting straight, even in those two days.
If you read my post above I was able to go to gym yesterday and I did not have any pain while there, but it was still painful once home if i tried to bend and with turning in bed.
A year ago I complained to my onc about some hip pain and was told it was bursitis. I never had any scans but i think it is time to ask for one.
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Nikola - when I first presented with hip mets, I barely had any pain. It was mostly a twinge and not all the time. However, in the time it took for the Arimidex to work, it became much more painful and the pain was there all the time and, in fact, it hurt even when I was just sitting there without any movement at all. In other words, for me, the pain got worse and worse until the Arimidex started to work. So, It sounds to me that you may have something else besides possible mets going on since the pain improved enough for you to go to the gym. Quite possibly, it is due to the Femara or maybe you pulled something in your back. Have you looked up all the possible side effects of Femara? I know the Faslodex used to make my lower back hurt, as well as other areas. You might visit your general practitioner and see what s/he suggests. Good luck!
Racy - I do not feel the "pulling" feeling unless I move a certain way.
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Thank you Cynthia,
yes pain is much better, actually when walking/running there is no pain. I am still sore with bending and if I move certain way. Even bending is not bad after exercising, while I am hot.
I stopped femara and not sure I would restart it. I will call my onc tomorrow just to let him know I stopped femara and see if there is any way to have a scan, just to be on the safe side.
two days ago was two years I was diagnosed and I am extra nervous these days.
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Nikola, there is one rule that most stage IV people live by and that is if you have that pain at the same severity or worse after two weeks get it checked out properly. It's a good rule to live by even if you are not stage IV. I would ask your onc to do a set of scans at least once every two years just for your peace of mind.
Love n hugs. Chrissy
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Nikola,
You can always go to your family doctor with problems. If she thinks it is a problem, then she will refer you to the onc.
Racy,
As the mets gets worse, it is constant.
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Thank you for this forum. When I was dx in 10/11 I had been having pretty bad hip pain both sides mostly when laying in bed. I had a very difficult time sleeping. Had a bone scan and was negative. The pain has come back- again interupting my sleep. I feel silly asking for a scan again- any thoughts? Initially the pai went away after a month or so. Thanks
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I called my onc today and was told it sounds like back injury not mets. No way he would give me bone scan (I am in Canada) and he would like me to restart letrazole, At the end I said I would give him a call next week if pain still there and would reconsider starting letrazole next week.
Because I did not have node involvement there is no planned scans for me unless symptoms arise.
Since starting letrazole I had three ear infections that were treated with antibiotics, my right ear is plugged most of the time and I was diagnosed with chronic sinus infection. My right nostril and sinus below my right eye always feel stuffed and heavy. I just had CT scan on Saturday of my sinuses as ENT specialist thinks I have deviated septum. I am 44 and never in my life had sinus or ear infection. I asked ENT and onc about connection with chemo and letrazole and was told no connection.
Thank You girls.
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Nikola - would your dr consider letting you switch from Femara to Arimidex? Perhaps, for some reason, you're having an unusual reaction to Femara. I've found some older posts on here where some other women developed chronic sinus infections while on Femara. Good luck and I'm glad that your back pain doesn't sound like mets. Have you tried icing it? I always forget to do that, but it usually helps.
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3 girls - you might consider seeing your gp to get help determining what may be causing your on-going hip pain. I know a few women, who don't have cancer, who have hip pain, especially at night while trying to sleep. Have you tried sleeping in different positions, especially avoiding putting pressure on your hips? The good news, it doesn't sound like mets.
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Nikola I'm sorry your onc won't order a scan for you but glad you have had your sinuses scanned. Some of the side effect that we get from all of the AI's are poopooed by the doctors as not being possible. Believe me when I say they are not only possible but if you can get hold of the list put out by the dug manufacturer you will see them written up. The docs don't acknowledge them because the patients would a lot of the time refuse to take them if they knew just what they were.
Indeed a change can often have a good effect. I was originally on Arimidex but was having a very hard time with it and was then changed to Femara which has given me little or no SE's at all and I have heard of it the other way around as well. It may be worth asing the question.
3girls it's good to know that your hip pain is not mets but it could be early osteo arthritis. I sleep on a slightly deflated air matress to relieve hip pain due to arthritis and I never have interupted sleep because of the pain any more. Your hip joints could also be inflamed so taking an anti-inflamatory may also help. I take a natural one called Boswellia and it is very good and available in most of your major stored over there. Just a couple of hints that may help. Good luck.
Love n hugs. Chrissy
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Dear all, I see how many of us have concerns regarding pain in joints, muscles, etc. So would like to ask my questions about it.
I have been having aches and pains in both knees since October, when I started taking Tamoxifen. I am not sure, if that's the drug, just guessing because of the timing. My left knee is worse , than the right. Some days it hurts/locks more, makes walking hard / limb, than others, but the pain is there all the time. I am fine at night time and when I am sat with my legs up. But walking is a struggle. Then after I am on my feet for a while, it starts radiating up my thigh, one day it can be in the inner side, another day outer and sometimes slightly in hips. Sometimes it hits like sciatica pain.
Had an x-ray couple of weeks ago. They said it is mild arthritis and osteochondritis in spine and just advised me to lose some weight. I am not overweight, but have put some on after the treatments.
My concerns are, that if they were bone mets, wouldn't the pain have got worse since October by now?? Or wouldn't it hurt constantly, no matter what position I am?? In certain positions I am almost pain free.
Normally, I am a lot better after 400mg Ibuprofen, but don't want to take it every day, mostly to see what is the pain like each day. There is nothing else I can think of doing at the moment. Blood work was ok two weeks ago and other than this issue I am fine. Lots of energy, good sleep and appetite.
Thanks for reading and any input is appreciated.
Chrissy, I always read your posts, wherever you post and admire you so much. And many thanks for this thread.
Hugs.
Karina
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Karina, thank you for the compliment.
I think you will find that your knee and leg pain is due in part from the Tamoxifen and the other part from arthritis. I'm not a doctor but I have found that using a natural anti inflamatory called Boswellia has help me a great deal with my osteo arthritic pain. It's hard to describe mets pain as there is nothing that can compare with it but the intensity of it speaks for itself. I understand that we all fear the possibility of BC returning and sending us to stage IV but to be truthfully honest, I am stage IV and now do not worry about it at all...............it is what it is and there is nothing I can do to change that just live my days to the best of my ability and never miss an oportunity to laugh.
In Australia we have a product called Panadol-Osteo and it is specialy formulated Paracetamol and is often given as a pain reliever for Arthritis. Here it is available over the counter at the Pharmacy. Perhaps if you have a word to you Pharmasist or you doc, they may be able to stear you towards something of the same ilk where you are. Goos luck!
Love n hugs. Chrissy
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3girls, Your family doctor can help if you are ever unsure if you need to go to the oncologist. They would also be able to send you to another type of doctor depending on what they think the source of pain is.
Nicola, I am glad that they are getting to the bottom of your problem. Sometimes allergies are something that get worse as we age which sounds like id the root of your problem. Consider an over the counter decongestant.
Karina, The Tamoxifen causes joint pain. Have you tried Aleve?
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Thank you Chrissy.
They don't have Boswellia where I live, but if they have it over the counter in the UK, I will ask my husband to bring some over. And I have heard of just Panadol, but will ask for the Osteo one. But, how safe is it to take pain meds every day. And if it's caused by Tamox, can't imagine taking them for five years. Somehow, I don't feel comfortable with the idea. I have also heard that joint pain is better in summer time.
Ma111, thank you for your recommendation too.
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A friend of mine was just diagnosed Stage IV at the get-go with lots of mets on her spine. She is about to start low-dose Taxol. Will she lose her hair? I had ACT, so of course I lost it due to the AC - don't know what would have happened if I had just had Taxol.
Thanks!
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Nicola, I don't understand why you're saying your onc won't send you for a bone scan because you're in Canada? I'm a Canadian (I live in Calgary, Alberta) and I've had two bone scans, 6 months apart.
Karina, there is no reason to be afraid of pain meds. You should be more concerned about uncontrolled pain. If you pain isn't managed properly, then you will have constant pain even when you shouldn't. There is no reason to suffer or be uncomfortable. My onc convinced me of that. It's made a world of difference to my quality of life.
Sweetbean, Taxol causes hair loss in almost everyone. I wore Elasto-Gel cold caps for my 18 treatments and managed to keep my hair. The nurses were so confused when they didn't know me and looked at my treatment sheet = ) I am so grateful to Ice Wraps for getting my caps to me in time to freeze them for two days before my first treatment. I did buy some beautiful wigs in case, and am holding on to them for if and when I need more chemo in future.
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Bone mets almost never show up in the knee. If you have knee pain, it's most certainly from tamoxifen or your AI. Only old-fashioned doctors ignore that women do suffer these pains - my own oncologist admitted these drugs can cause awful side effects, and he gave me pain meds for the joint and bone pain. It was worst in my knees and also in my hips.
Unfortunately, tamox didn't work for me. I'd take those SEs over what I have now any day.
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Sweatbean, If she is on the 3 weeks on, then 1 week break, it might just thin, not full loss. Her oncologists should have told her. Sometimes we can only digest 30% of what they tell us though especially in the beginning. She can also call the office and ask one of the nurses or wait to her first treatment and ask then.
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My onc told me that the mets don't go beyond the elbows or hips, so any pain that is in my hand or knee, etc. I don't panic about.
I know that the combo of Tamoxifen and Zoladex causes symptoms but I think that many of them are as a result of the lack of estrogen. I am often very stiff, especially my hands and back. And I don't think the fatigue is helped by the instant menopause at age 40. I just turned 41 and can't really believe what has happened to me over the last year but will suffer the early menopause if it buys me time.
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BouncingBetties, he said my symptoms does not sound as something to be checked on bone scan. Last June he told me my GP would follow me and to call him only if any concerns. I guess back pain was not too important. Luckily, my GP does not have problem with sending for scans.
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Nikola, I'm glad you have a good GP. I'm a stage IV metster so maybe that's why my onc is more involved with handling my care. Besides my neuro, my onc has been the only doctor I've seen since August 2011. Being stage I, hopefully you don't have any reason to worry about the back pain. Wishing you a cancer-free future.
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Would any of the stage IV gals be willing to share their course of action after a BMX for ER + IDS? I know my cancer is 2b, 95% ER receptive so that seems to me has all of the oncs, surgeon a little too giddy and confident in Tamoxifin. They keep telling me they may not do radiation if my nodes and margins or clear after surgery June 1, but I had at least 1 reactive node before neoadjunct chemo...I'm not afraid of radiation. Yes there can be long term side effects, but long term is what we are all going for so I don't see what the hesitation is. Also they don't seem interested in taking out the ovaries (I'm 40) as my surgeon said today that medical supression is better than removal...what?! really?
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7 of 9 - my understanding is that:
Surgical removal of ovaries VS medical suppression are equally effective. So choice of which one may depend on other factors (personal preference? BRCA status? Past gyne problems that lean towards surgery?)
Radiation, last I heard, helps prevent local recurrence, not distant recurrence (mets). Your risk of local recurrence probably depends on what they find at surgery, as the docs are saying. Are you planning reconstruction? If so, radiation can affect the process. And radiation can increase risk of lymphedema.
So obviously you want to treat your cancer with absolutely everything it needs. First things first. But if the onc's don't feel radiation is necessary, I would personally be happy with that.
You asked for personal experience - I was originally stage 3C with lots of positive nodes. So I did need radiation. I didn't reconstruct, although at first I expected I would. The further I am in this journey, the more comfortable I am that was the right choice - for me.
Hope that helps. Ask away.0 -
7 of 9- My doctor said that removing the ovaries will stop them from producing estrogen and so would supressing them, but supressing them does not stop you from getting ovarian cancer. That is why I am opting to have mine out. That's one place I don't want this nasty cancer to go.
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7of 9, I agree with the surgeon to remove the ovaries. The rest sounds like sound treatment to me.
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Thanks to all for their replies and candidness. It is very appreciated.
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I just received the results of my latest CT scan. They were checking to see if my pulmonary embolisms of last autumn had cleared. They had. However, they found multiple small modules in my lungs. I'm afraid the cancer has spread into my lungs. I'm going to try to get a meeting with my oncologist to see what she has to say. So, I don't know if I'm stage IV or not, still somewhat hopeful, but not very.
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Gardengumby - Holding onto hope with you that the small nodules spotted are something other than cancer. Keep us posted - ((hugs))
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Many things cause nodules and scarring on the lungs (smoking, pneumonia, asthma, etc). Hoping your nodules are benign (maybe caused by your PEs?)
Hoping for good news from your Onc.0 -
Gargengumby- I just had the same scare and then they sent me for a pet scan and they were not cancerous. The pet scan was easier than the CT scan.
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