Hormonal Treatment for Stage IV
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tryn2stay,
I have more stiffness than pain. I often say that when I wake up my entire body has turned into a 2x4. I have tried both turmeric and curcumin, but don't really notice that it improves anything. It's not so bad that it effects my life in any major way. I teach first grade, so I'm on my feet, physically and mentally, all day. I sleep very well at night!
Caryn
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Hi all,
My knees and the top of my right foot are the worst. Shoulder aches sometimes too, but not bad. My back aches too; basically my pelvic girdle just below my waist, all the way around my back. Much of mine is arthritis; not sure how much the Femara affects/worsens the pain. I've tried the tumeric; may try it again. Also have tried bosweillia (made my allergies awful). May try acupuncture. Or, maybe just get cortisone shots in my bad knee and foot again; they do help a lot. I switched from ibupropen to naproxin, and it was awesome for the first month. Now it's not helping much; no better than ibupropen but my tummy is better.
All that said, I know I don't have much to complain about. I'm still working full time, still having a fair amount of fun, and hopefully still progression free!
Hugs to all,
Terre0 -
Another thing that has helped some folks on AI's is Glucosamine HCI 1500 mg with Chondroitin Sulfate 1200 mg all in a single capsule, taken nightly. You can get it at Costco or just about any pharmacy.
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I'm an emotional wreck most days :-/ I had very little problems while on tamoxifen. 2 1/2 years ago had a partial hysterectomy and started on arimadix I and the roller coaster ride began . I have since switched to femara. It seems to be getting worse. I'm on 300 mg of wellbutrin and it doesn't seem to be helping. I'm having trouble with all the meds. Prior to the big C I rarely even took asprin. Now it seems I need a pill for everything which would be fine if I could feel some relief ! Ugh stupid cancer . Thanks for listening . Tina T
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Hi everybody,
Thank you for all of your encouragement and support earlier this week for my positive scans. I had an appointment Monday and my tumor markers had gone back down (I'd panicked a month ago when they were up ).....so not sure what caused it. Reading through your recent posts I am realizing that I might not even "belong" on this thread because my treatments are so different than yours, but I like all of you so much I think I'll stay anyway!
I do have some comments:Cathy - I realized in the middle of the night last night that yesterday was June 5th.... I hope your appointment went well.... hope to hear when you are ready to share.
Chemo - I started chemo within weeks of finding out I was stage 4 because my bone mets were so widespread....and then started AI's....so confused by thought that you can't do AI's after chemo. (?) It definitely worked for me although I am Her2+ in addition to being ER+.
Jennie - I had a kidney scare last year - my creatin (sp?) levels were really high and my oncologist sent me to a kidney specialist who checked me and said they looked fine and that I just needed to drink more water. My oncologist had also told me that he couldn't continue with my treatment if levels stayed high. I drank gallons of water and sure enough, by my next appointment they were down again and it has never been an issue since.
Emotions - I dont' have emotional issues with Arimidex (my husband and children may not agree with that statement) but I do take a supplement called 5-HTP and I really believe it helps. I've run out a few times and can really tell the difference....it seems to keep me very stable.
Joint pain and stiffness - there are no words to describe how stiff my legs are, or how much my joints ache. It wakes me up at night, and I wake up in the morning and can barely move. It's why I have tried every AI there is plus Faslodex in an effort to lessen the stiffness/pain, but nothing works. I agree with Skylotus and KiwiCat on how it affects quality of life.... my oncologist thinks mine is worse because I take the Lupron shots plus AI's. Nothing helps - I've tried turmeric and flax seed oil and fish seed oil and baths with Epson salts and tons of pain meds. Actually - like someone else said, the ONE thing that does seem to help is activity/exercise..... although I find it very hard to want to move (or even get out of bed sometimes)..... when I do walk/run/work out it is better. My oncologist tells me to do yoga and I roll my eyes and wonder how I am going to do yoga when I can't even get down on the ground. I don't usually have the fatigue that some of you are talking about....but the joint pain and stiffness are almost debilitating. Like right now it's 8:25am in Denver and my knees won't even bend halfway.
Ovaries - my oncologist also said mine would be removed laproscopically (sp? I need spell check). However - here is a new one - I think she finally understands how bad my stiffness and joint pain is because this last visit she suggested I go OFF of my Lupron shots ( I am 47, was premenopause so Lupron shuts off ovaries) and try taking Tamoxifen (which I never did in the first place) and she said she would just "watch me closely" to make sure that doesn't cause progression. Thoughts? I told her I'd much rather be stiff than the alternative.....but I when I woke up this morning I was so miserable that I think I might try it.
Last - I love this thread not only for the love and support but because I learn SO MUCH.... I had no idea there even were generic brands of AI's (I really am naïve). I checked my bottle and sure enough - my Arimidex is generic..... wondering if perhaps I try the real thing there wouldn't be so many side effects or if that is just wistful thinking. Anyway - I think my oncologist was amazed this last visit at how many questions I had. I wrote down all the things I've learned and all of the different treatment plans you all are on and started firing questions at her..... maybe she realizes that she can't just give me canned answers because I have all of this combined knowledge behind me!
Hugs and hands,
Andi
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Bestbird - I've thought about trying that next, so thanks for the tip!
Tina - I hear you! I take Prozac and it helps. During Stage 1, I tried Welbutrin and it didn't do a thing. So you might ask for something else.
Andi - of course you belong here with the circle of friends! I think every experience is different. And we're all going through different treatments. But I think what we have in common is the desire to be supported and support others.
Hugs to all,
Terre0 -
Hi Andi and everyone,I did go to London to see my oncologist yesterday and was told they didn't seen anything in my bone scan to be too concerned about. I do know that my arthritis does show up in a bone scan as it did my first time around. However my doctor was rather upset because I should have not had my chest, abdominal, pelvic scan done but they have been updating the computer system to Hugo and it glitched out the radiology dept some how. While I was there he called the head of the dept. and stepped out to take the call and returned saying he asked for these scans STAT. I got a call this morning saying come in for a 725 am appointment on Monday morning. He said he wants me to make it on this drug trial and all the paperwork has been done .. just waiting on these scans that are required to get into this trial treatment. He said again that the results are very positive and if he was to start me on Tamoxifen I would be disqualified to make this study. I understood at my last appointment that I could take that too but he said no. He must have mentioned it before we discussed the drug trial. Anyways he is not happy that it is taking so long either but does want me on this trial. He also said that Pfizer announced last week they will no longer be looking for more participants for this study as they now have enough. I talked to the drug trial dept. again this morning and everything looks like a go for me .. just again waiting on these required scans.
Also my main complaint with the arthritis was also severe stiffness in my knees. Some pain yes but the turmeric (at a very very high dose) does work wonders for me. It works as an anti-inflammatory drug better than my prescriptions do. Again this brand (New Chapter) has a much higher amount of the curcumin than most and it works great for me. I can not however be on anything herbal or health meds on this study so had to discontinue for now anyways. For me it was the chemo not the meds that caused my arthritis to get so bad. We are all individuals though and what works for one may not for another.
Hope everyone has a good week end.
Cathy
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Andi Tamoxifen is often used by stage IV girls even after menopause so worry about it being unusual. At this point, quality of life is all important. If we have to have this disease then we need to make it as comfortable as possible to function. Andi, here we are all on a hormonal of some sort so you definitely do belong here........anyway, belonging is feeling comfortable and supported by the others on the thread no matter what the treatment is.
Cathy, I didn't realise that you were being considered for a trial I just thought your onc was being a bit slack
Sure hope those scans get done ASAP and all is good to go ahead with the trial.Love n hugs all! Chrissy
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hi, I started on aromasin/affinator a year ago.. since then I have become a type 1 diabetic from the meds,lost 70 lbs and lost taste and appitite, also have developed gave disease in my stomach which is like vercose veins in your tummy and been bleeding for 3 months and having to have blood transfusions and 2 endoscopy to stop the bleeding...Ihave been off a/afinator for 3 weeks while i some how regain my strength and energy..had to get off because I had an infiltration in one lung ! was feeling like I was wasting away, but now beginning to feel like i am on the mend
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Andi, thank you for replying. I am drinking lots of water, but my mouth is always dry. Spoken with my local doctor and they think it could be from Lyrica, so have lowered the dose to see. I will however try and drink more.
I have trouble with both knees with arthritis and was due to have my left knee replaced, when I had the progression. My mo says I have to be in remission before I can have it done. Chrissyb, I saw that you had your other knee replaced last week (hope you are doing well) was there any talk of not being allowed due to cancer?
Before I get out of bed I try and do some knee stretches my physio showed me and this helps a little with the stiffness.
Take care everyone
Jennie
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Hi Rosie! Oh my gosh you have been through the mill!! Here's hoping the break will allow your body to heal so you can get back to feeling more on top of things.
Jennie,yes, I had my second knee replacement done last Saturday and I was released to go home just a few hours ago. Yes, all went well and now it's just doing the exercises and healing. It does take time but is well worth it.
Both times the only question I was asked was, is all going well with the cancer.......nothing else. He didn't ask about progression at all or perhaps that was his question on progression. I think they take into account just how active and how bad the progression is as well as how far into your treatment you are. I know things and protocols are a little different between countries when it comes to something like this but I would be asking why that would be bothering him when hips are replaced due to progression all the time.......why not a knee?
Hope you get some better answers and perhaps another doc may be in order just for a comparison.
Love n hugs. Chrissy
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aw thanks chrissyb after the first iron infusion i think i am feeling a tad better.... just wondering why my onc will switch me to falsodex as I think it is different than an al.......and yes I may need a second opinion although I love love my onc
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Thanks Chrissyb - Anxious to get on that trial too!0 -
Cathy - that's great that you're getting into a trial! Fantastic! So glad they're getting the scan done on Monday.
Chrissy - Glad the surgery went well and you're home. While knee replacement doesn't sound fun, I am a bit envious as I need one, but given that the wait list is over 3 years for "healthy" people, it's doubtful I'll get it anytime soon. Will probably ask for another cortisone shot soon. Here's to quick healing for you!
Rosie - so glad you're getting some relief. What a hard road you've had to travel. Here's hoping they get it sorted and get you onto something that has fewer side effects.
Hugs to all,
Terre0 -
Rosie, glad you are feeling a tad better after your first iron infusion........iron does tend to give you a boost. As for the Faslodex, it is an estrogen receptor antagonist so rather than stop your body producing estrogen which the AI's do Faslodex works by blocking the estrogen receptors on the cancer cell so once again they starve. It's a reasonably easy treatment as in it's and injection into the heavy muscles of the buttocks. There are a few secrets that have been found over time from those who have received this treatment and keeps the SE to a minimum. Firstly, before it is injected, take the weight off the side that is going to be injected so the muscle is very relaxed, make sure the injection syringe is warm and this is done by holding it in your hand for a few minutes and ask that the nurse who is administering it to do so VERY slowly. Most times when this is done the site pain as well as other SE are minimized.
Terre, knee replacement surgery is extremely painful! It's not the knee itself but all the disturbed soft tissue, muscle, nerves and tendon that surround the knee. It's hard to learn to control the muscles through the pain as the swelling is high and puts pressure on the already injured tissue so one is loathe to do the right thing but the best results always come from pushing through. The first four weeks are the hardest I have found but once the swelling begins to be more controlled the pain also starts to dissipate and so movement become easier and by that time control of the muscles has returned so it's easier to use. The whole healing process takes about a year which is really a long time but it did take that long with my other one before I could say that it felt like it was part of me and not a foreign object.
I sure hope you can organize to get things moving for you as far as replacement goes, as I always say being on a waiting list and moving slowly up and maybe having to cancel in the end is better than never being on the list at all........at least it gives hope that something someday will be done.
Cathy, I'm keeping my fingers crossed that you will get news of the scans soon.
Take care girls!
Love n hugs. Chrissy
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Thanks, Chrissy. I know that knee replacement recovery is a long road and quite painful for quite some time. Not fun! And I agree with the list, but they're not putting people on the list here unless they pass the "pain threshold" which is apparently amazingly high. There are people on crutches and in wheelchairs who haven't made the list! That said, I keep asking about it. My left knee is bone on bone; no cushioning left whatsoever. I had the joys of physical therapy after the rod was put in my femur. Having all the muscles across your butt cheek cut open wasn't fun. And the physical therapy hurt like mad, but the only way to get off crutches was to do the exercises and pay my dues. I still have to keep doing the exercises to keep everything from kind of wimping out again - like it's hard to lift my leg up to climb stairs if I skip my exercises.
As my grandmother was fond of saying..getting old isn't for sissies!
Hugs to all,
Terre
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Hello everyone.
Chrissy, I agree if people are having hips replaced why not a knee. This is what I will be asking when I see my doctor next month.
Kiwicatmom, I'm sorry to hear the waiting lists are so long and hard to get on, doesn't seem fair
I changed my hospital cover to the top table (had a 12 month waiting period)so I would be eligible privately, but still believe there are high out of pocket expenses.I was interested to read about tumeric/curcumin and will definitely be trying it this week. Hopefully this will help with the arthritic s/e.
Take care everyone
Jennie
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Jennie the only out of pocket for me was the pre anesthetic visit in his rooms everything that was done in the hospital was covered so my total cost for the replacement was $345 and that's hospital, surgeon and his off sider, anesthetist and his off sider, prosthetic, theatre fees and hospital bed. Oh I forgot, add another $24 for my pharmacy stuff so amended total is $369.
I have top hospital and top extras.......costs me a fortune as I'm on a pension but worth it!
When you talk to your orthopedist just ask what out of pocket expenses you can expect and I'll bet he says nada and the same with the anesthetist.
Love n hugs. Chrissy
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Hi Chrissy.
That's how it should be. I am also on a pension ( dh is blind) . We changed from basic cover to top so that I could have the surgery as basic didn't cover it. I live in Perth so there shouldn't be that big a difference from your hospital,or so logic would think, lol. I will definitely be asking the doctor direct when I go back, even the visit costs about $70 out of pocket.
Take care
Jennie
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Jennie anything that is not in a hospital there is always out of pocket but hospital there is not......I have no idea why those rules are.....silly if you ask me but it's still better than having to wait for years to get something done.
OMG! if you're in Perth its about two in the morning! What are you doing up so late you should be resting?!
Hope you find out that the costs are not going to be as bad as you think.
Love n hugs. Chrissy
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Jennie - I am on Lyrica as well... 150mg 3X day for my neuropathy (another lingering side effect of chemo) .....it's interesting - neither my oncologist or the kidney specialist mentioned it could be from that. My feet are seriously numb, so if they lowered my dose I would really have a hard time....anyway -just drink more water and do keep me posted.Cathy - I didn't realize you were being considered for a trial either...hope everything moves forward quickly....
Hugs,
Andrea
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hi, I have experienced the very same things and to add my stomach got inflamed and has been bleeding .so that too had put me down. I had to stop affinator and ar cause it caused an infiltration in my lung.. since off the a/a i have been struggling to regain some sort of eating (lost 70 in 11 months) I have had to have blood transfusions and now iron infusions! I begin Faslodex shots tomorrow best of luck to you
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Hi Rosie,
Hope the Faslodex went well and that you're on the road to better times and better health!
Terre
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Hi all!
Starting Femara and a new trial on Tuesday. What an emotional roller coaster! Excited about trial.....freaked about Femara. Had awful emotional response to arimidex...just hope this time around is different but you know I guess we have to take things one moment at a time and again ask "Am I OK right now" and yes I am....as is almost always true. I guess its just fear which is almost always anticipatory. But when I can't pull myself back to the moment I get on this board and feel less alone and eventually always better. Thank you so much. God bless you all in your journeys...your courage astounds me and makes me smile
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Valerie goodluck with your new trial and your change to Femara......I went from Arimidex to Feamara and have found the SE almost non existent after suffering every SE listed on Arimidex so I hope you find the same.
Yes, this board sure is great for making you feel less lonely.
Love n hugs. Chrissy
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Congratulations, Valerie! I'm on Femara, and it's not bad. Started it in February 2013. Hot flashes have largely subsided (from 4 or 5 a day plus night sweats at first to maybe 4 a week now). Some joint/bone pain, but hard to tell if it's Femara or arthritis. The bizarre side effect that I've read about here and am experiencing is itchy, flaky skin between and under my eyebrows. Strange, but not horrible. Never had dandruff in my scalp, let alone in my eyebrows!
Good luck on the Femara and with your trial!
Terre
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Hi Valerie - I also am starting a trial plus Letrozole (Femara) on Thursday. Wondering if it's the same. Is it the one with the PD -000 whatever numbers aka Palbociclib? If so there is a thread here for it if U haven't already found it search Palbociclib. Nervous too about starting but excited also!Cathy
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Cathy - I found New Chapter turmeric yesterday and started taking it last night.... I'll keep you posted and let you know if it helps my joints. Good luck with the trial!
Andi
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Andie - Great! I sure hope it works as well for you as it did for me. My onco said I can't take anything as it may interfere with the drug trial. I went off it and with in 2 days I started to feel more stiffness and pain again.Cathy
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Good Morning Ladies (& Gentlemen if you're here),
I've been on Arimidex since I was diagnosed three and a half years ago. It has worked beautifully for me in terms of controlling my mets (SE are a different story). A few months ago my SE changed and there was some new activity in my mets. My MO and I believe that this may have been related to generic Arimidex (Anastrozole) from India. She prescribed name-brand Arimidex for a three month test. We haven't reached the three month mark, but my SE are back to "normal." Anyway.... Arimidex is expensive. Because there is a generic available my insurance company won't cover the cost of the name-brand. I have found "Arimidex Direct" which is run by AstraZeneca. My MO faxed a 90 day Rx to them which, after I filled out a form & provided a credit card, they quickly filled by mail. The cost is $30 per month! No Insurance forms, co-pays or hassle! I am scheduled to have my bone scan, CAT scan etc in mid-July but in the interim I'm not paying over $400 a month for my AI of choice.
If you want to take the name-brand Arimidex without paying the non-Insured price check out Arimidex Direct. Finding it was easy and it has relieved part of my anxiety for a while!
Happy, SE-free days to you all!
Virginia
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