Hormonal Treatment for Stage IV
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I can't help with the Femara SE, but the IV bone strengthener is probably Zometa. The reason for the dental exam first is because of a rare SE osteonecrosis of the jaw (ONJ) that can occur if invasive dental work is done while on it. This way if you need any invasive work, such as extraction, it can be done before you start.
Another SE can be bone pain right after treatment. Drink plenty of fluids and some people get relief from taking Claritin 24 hr the day before, the day of and for a couple of days after (not Claritin D). You might need Calcium too.
Check with your onc before taking anything though.0 -
I have been on Femara for a little over a year and also have a bone strengthening treatment every 4 weeks. I am on Aredia and I have to get clearance from my onco before my dentist will do anything. There is a possibility of breaking a jaw bone, or of having excessive bleeding, and a big risk of getting an infection that would delay a bone treatment. I had to have a root canal a couple of weeks ago an getting the appointments scheduled was a big to do. I had to take antibiotics for 2 days before and until 3 days after to keep any chance of infection from happening.
Before you bone treatment DO drink all the water you can that day to help keep the joint pain from being too bad. I do not take Claritin, but because I sometime get nauseated with the treatment they give me a low dose steroid that keep me from feeling sick so I can drive home without having to stop and throw up. I normally have about 3 or 4 days after my treatment that I feel like I have the flu, I am achy all over and just do not feel well. After the 3rd or 4th day I am fine again.
With both the Femara and the Aredia I would be able to work full time if I had to, but part time or a flexible schedule would be easier to manage. Because the job I have involves a lot of walking and lifting heavy, bulky items I can no longer physically do what the job requires so I have been on disability leave for the last year and now I am on extended medical leave. Most days I can do pretty much anything I want or need to do, but there are occasionally days that I just have to rest all day. If I had an office type of job I probably would not have taken any leave except for a day or 2 when I had my monthly treatment. (I am looking for a part-time receptionist type job, but that is mostly so I can have a reason to get out of the house without going shopping!)
If you have any other questions ask away or you can PM (Private Message) me anytime.
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Femara affects everyone differently depending on so many different factors. You may have an easier time of it than others. I know a woman who has been taking it 15 years with no side effects. (She must have been on the initial trial.) She is also still taking bone strengtheners and riding around in her bike and coming to our exercise classes! She says she also has no side effects from the bone meds.
I can't say I was as fortunate as her. But I have stuck with Femara and find, 3 and a half years later, that the side effects are much less. If I could do it over, I probably would do a gluten-free or reduced diet from the start before any side effects appear. Exercise definitely helped me with the joint pains. Often I could barely get on the machines, the bike, the kayak, whatever, but after moving those joints for a while I'd feel better. Just be careful to warm up the muscles first before putting too much strain on them. But then again you might have no side effects....
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I was switched to femara from arimidex in june due to side effects. Before the switch, my doc had me stop taking the arimidex for 2 weeks. Boy did that feel good. I felt like my old self for a minute there. Lots of energy, no pain, happy. I can't tell you how good it was to feel the old me. It's been 3 months on the femara now and the SE seem to be back with avengance. I can't sleep at night due to general all over body pain, I feel nauseaous for half the day and I could literally sleep the entire day and still wake up tired, not to mention depression. The SE's this time around seem to be even worse. I'm starting to think that my mets might be on the move. Luckily I have a scan coming up on the 12th but I don't see my doc until the 19th. I have some left over pain meds from an operation a couple years ago that I have actually had to take in order to get some relief so I could sleep. I don't know what I'll do when those couple of pills are gone. With the armidex, I felt like I was 90...... very very stiff but after moving for a few minutes things would loosen up. This is like a tooth ache all over my body that just won't go away. Any suggestions?
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Strangely, the strong pain meds do nothing for my AI pain. But Advil does. I don't understand this, but I buy Advil from costco in a REALLY big bottle.
All I've got... *susan*
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Frapp, Make sure you check those pain meds that they have not expired and if they leave a powdery substance on your fingers while handling them, they have been chemically altered and are no good. Most of these narcotics have codeine or morphine derivative. I did Femara and had joint/muscle aches, stiffness, nausea and now with Tamoxifen( 3 months now taking it)my bones hurt and ache too, especially my spine mets and hip met. they hurt on and off like I have bruised them or they are tender, not this relentless ache when I had progression. Still you always wonder in the back of your mind is this drug working? Hope you find relief and call your onc for pain meds if needed. Dawn (RN also.)
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Thanks Dawn. Well, I hope it's not progression. Its not like a bruise or stiffness, it's more like a relentless ache. Seems to get worse after noon time and keeps me up at night. I have spinal and pelvic mets also. I'm hoping its just all this darn rain we've been getting. I'm having a pet done on Monday, so I won't have long to wait.
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Frapp - cut out all the sugar and try glutten free products as much as you can. That and taking Aleve morning and night have really helped releive the rentless aches in my bones and mussels. Do check the expiration date on your other pain meds, if they have expired or become powdery on the outside they may be either not doing anything or actually making the pain worse. I have been on Femara for 13 months now. Hope you find some relief. amyjo
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Those symptoms sound like what I had. The nausea went away after a few months. Vigorous exercise helped with the fatigue and joint pains. Sometimes I took ibuprofen or an aspirin before exercising to make it easier getting started. Sometimes I needed NSAIDs afterwards because of exercise-induced muscle pains. If you take the Femara before going to bed, this may help you sleep better. This worked for me.
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So glad to hear the nausea goes away. Maybe I'll stick with it a couple more months. I'm was thinking of asking to go back on the arimidex. I was stiff but not in pain and no nausea.
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I seem to be so lucky! because I´ve been on AIs for 3 months now (one month Arimidex, two months Femara) and so far, no side effects worth mentioning. I get the usual 3-5 hot flashes per day and when I started working again after my four weeks holiday I began feeling my joints and bones quite a bit but since I started excercising again, followed by a little swim in very warm slightly salted pool water, these feelings (can´t even call them real pains) have completely disappeared. Now let´s just hope that Femara also does the trick on the tumor cells. I will get my blood results tomorrow and have my oncs appointment on Wednesday.....wish me luck.....
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susa,
That is so wonderful that you don't have side effects! So do tell us about your holiday. Did you have a wonderful break?
*susan*
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I didn't have any side effects until 3 months in. Then it hit. First tired, then aches which progressively are getting worse and now nausea off and in. More on then off. This has all happened over the last 3 weeks. Maybe it will settle down
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Glad to see you back, susaloh! I've heard good things about warm, salty water but still have to try it myself. I've already checked out a salt water pool near me for the winter. Good luck on your test results!
We are planning on a sailing vacation for the fall. Hope I can put it all together before then.
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Hi Ladies
I'm new to this thread hope you dont mind me asking but, what have you heard about warm salty water?? I'm intrigued.
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http://www.livestrong.com/article/275637-therapeutic-benefits-of-sea-salt/
It's good for muscle and joint pains. Probably due to the iodine or other minerals. Heat helps as well. But I've found heating only helps until you have to go out into the cold. And then it seems to be worse.
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Hi, everybody,
that´s lovely of you to remember and ask! Well, the holiday was really great. We lived a simple life, close to nature and exposed to the elements (more rain than sun, I´m afraid). After a while, and you need some weeks for that, you switch off your head completely, just do the obvious and only one thing at a time... Apart from sailing, we did a lot of walking on lovely swedish and danish Islands, borrowed bikes, went running, and climbing (once, but rather involuntarily...). I also have irritable bowl syndrome and from day one on Femara, my symptoms changed completely (as compared to Arimidex and Faslodex). The usual all day bloating was gone, from one day to the next, but instead I got such sharp bowl cramps, which I used to have like once every six months or so, but now suddenly now every day, and several attacks per day! The rest of the time I was completely fine, but to keep the cramp thing under control (in order to avoid diarrea) I had to revert to a very restrictive IBS diet...so no fish and chips in the harbour or danish hot dog, we actually went out for dinner just twice and instead cooked our meals on our de facto one-flame-cooker (the second flame doesn´t work), so every day just rice (kept warm in our bedding while doing the rest) and fish or chicken etc, which you may think is sad, but it actually really helped together with all the excercise for us to feel really good and in shape...
So it was brilliant but I´ve been back for a month and working.... and not feeling too good just now, but it is still rather my bowl hurting then the cancer....After 3 weeks, fortunately, the cramps got slowly less and less and disappeared and then I got carried away and tried to reduce my IBS medication, very slowly, but still it got out of hand and I spent the last two days with so much pain in my stomach, and the pains feel so different from "the old days" that I think again, o god what´s happening in there....
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Susa,
Your holiday sounds really lovely. Sailing, walking, doing only one thing at a time. But to have an IBS episode is most unfortunate. Love that you kept your ricei in the bedding to keep warm! So clever. Fish and chicken sound delicious. Too bad about the special foods that you had to miss this trip. Thank you so much for sharing.
*susan*
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Dear Ladies,
remember the salt water pool? I´ve tested it now. Last week I went twice to do my little weight lifting routine and went running once, but had no time for the pool. Well, the pains in my knees, shoulders etc did not go away. Maybe they changed from Old-Age-Pains to Sports-Pains, but the stiffness and pain were still there. Now today after my routine I did another 20 min of paddling about in the salt water pool, and there again, all pains and stiffnesses completely gone! So I can only recommend this for joint and muscle pains.
Hi Susan,
thanks for your reply! Now that I have upped my dosis of Amitryptilin again to were it was before, well, the terrible permanent cramping pain is now going over into really terrible bloating... this afternoon I felt like a baloon almost exploding, and no development whatsoever. Hope it will calm down soon. At least I have finally dared to ring my bc clinc to know my tumor markers (before I get myself to dial that number, I have to run to the bathroom, just at the thougt of it!). The news was good - Ca 15-3 went down from 44 after 6 weeks of Arimidex to 41,3 or so after one month of Femara and down to 40, 1 or so after the second month of Femara. So basically this means I´m stable....It´s not terribly impressive but it´s given me three lovely summer months so far. Just hope it will last a little longer.....They have only measured the estrogen level once, two months ago, and it was at 8 (under Arimidex we got 13). So that´s better but I still don´t understand why it doesn´t go down further.
Anyway, I better go to bed, am exhausted!
Love Susaloh
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Well, turns out I had some sort of stomach flu. The diarrhea started shortly after my last post and stayed for 3 days. I'm all better now. Aches diarrhea and severe nausea are gone. So is 5lbs. Hope that stays away too. :-)
Unfortunately, I got my scan results today. Not good. I've had progession since June 30th. New mets to bone, suv values increased from 4 to 9.89. My guess is I'll be saying goodbye to femara. I see the doc on Monday. I'm currently in that numb stage and am hoping it hangs around till monday. Once that wears off the tears and fears are going to run rampant.
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Frapp,
I'm so sorry to hear this. Hang in there.
Lane
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Frapp,
I´m so sorry you had such bad news. How long have you been on AIs altogether?
And what´s suv values ? I thought an SUV was a car with four wheel drive?
Susaloh
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I've been on the AI's since initial diagnosis (which was stave IV from the start) since Jan of 2010. I was just switched to femara from arimidex due to the side effects. There was some slight increase in suv values in June from the prior but my onc wasn't concerned at that time. Now there are 4 new mets and the values have doubled.
I don't know what the SUV stands for but it measures the strength of activity. Anything under 2.5 is considered "normal". But when it goes higher it means the cells are active. (anyway, this is my take on it in laymans terms)
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Sorry to hear of your progression Frapp and I sure do hope that you just get changed to Aromasin and not a chemo yet.
Love n hugs. Chrissy
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I'm sorry to hear the buggers are migrating, Frapp. After switching and all, and still this. Hope they find something soon to halt the progression.
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SUV is for standardized uptake value, a measure of metabolic activity or how much sugar (FDG) is binding to the tumor as seen on a PET scan. That's my understanding.
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Well, just got back from docs. I start Faslodex on friday. Anyone have any info they can share?
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Frapp, there is a thread on Faslodex, check out the index. Hope it all goes well for you!
Love n hugs. Chrissy
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Thanks Crissy, I'll check it out.
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I have been on Faslodex since 8/4 and have been weak and tired since starting it. If my tm's haven't dropped considerably by the time I go back on the 29th I'm going to refuse the next shots. The pain and knots in my hips don't go away and I don't want to feel this way any longer. I know only you ladies would understand what I'm talking about. My family and friends would have me continue no matter what but I don't want to feel this way all the time. I also have a difficult time going to sleep and can't stay asleep. I have always been an insomniac but this is something totally new. Thanks for letting me rant. Darla
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