Arimidex - Coping with the SE's
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I know for sure that you don't have to do chemo to do the 'Look Good/Feel Better" program because I had ladies in my session who were 'only' doing radiation, and I did mine post-chemo too, during radiation, because that is what fit better with my schedule. They never even asked about what kind of treatments I was having when I signed up.
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NativeMainer - I'm just echoing what Ginger, and ruthbru have said - YOU DESERVE BETTER CARE. think the American Cancer Society will be a good place to start asking questions. Don't know where it would be - the radiologist, but definitely someone who KNOWS good cancer care.
You didn't just have a sore throat - you had BREAST CANCER. Did treatment - and are conscientious about doing what is best for your own well being. That should include medical cae and GOOD advice from a professional.
Sorry for this turning into a "rant" - but you DEFINITELY need to have follow up care. Have you gotten a second opinion about hormonal treatment? Should you stop? Is there something else you could be taking?
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Thanks everyone
--I tried to sign up for a Look Good Feel Better class and the organizer told me that I could go on a waiting list, but women getting chemo got priority. I was on the waiting list for about a year and finally realized that I wasn't going to get in.
I finally found a counselor after 4 months of searching. I contacted Social Workers at the Onc's office, she was full up and couldn't take anyone not currently getting chemo at that office. The Social Workers at 2 other centers only see patients getting chemo at their centers. I finally found a counselor through the American Psychological Oncology Society and am paying privately for it--worth every penny.
I have not gotten a second opinion about the hormonal therapy, but that is a great idea! I chose the hormonal therapy over chemo because the research reports showed better disease free survuval times than chemo for Stage 2, and the research reports for the chemo protocols all have statements in the "Discussion" or "Conclusion" sections that there was no evidence of benefit for Stage 1 or 2.
I'm going to do some research and find a Onc and schedule a second opinion visit, Maybe I can find one closer to home. I've stuck with the one I've got now becuase it was the first office I dealt with that didn't "lose" my chart or have to reschedule my appointments by a month or so shortly after finding out I wasn't going to do chemo.
Thanks for the second opinion suggestion-- i knew I get help here!
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NativeMainer - So, sounds like many of the programs available are at capacity and they triage patients...chemo first. That still sucks, but makes more sense than it being an actual policy that patients are denied services if they don't get chemo. I don't get the MRI/mammo thing, however....
Sounds like "I'm looking for someone closer to home" would be a good reason to at least check out another oncologist. And, sounds like you should request a copy of your records, keep it for yourself, and ask for copies of lab reports, etc. as you progress. At least you'd have most of your records that way.
Sorry you've been struggling....
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NativeMainer - GO FOR IT. I think TinaT is probably on the right track.... thinking programs try to deal with the women having chemotherapy first because the process is so devastating, and seems there is a never ending line of women getting this $@%!$# disease. But am sure a social worker would understand the persistent pressure of surviving having had bc.
Good to know you are going to get a second opiinion re: hormonal therapy. I know there are so many different options - and agree with you, as do my docs, it CAN BE more important for many people than chemotherapy.
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OMG, find someone closer to home! What would you have to lose? And, as Tina says, make sure you get copies of all your paperwork to take with you.
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Lyncerock that Melt Method sounds interesting. Glad that you found something that helps with the pain. I plan to look into it further. Does it require any movements where you have to use your arms to support you?
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~ I also want to look into the MELT method it looks interesting!
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Just here to whine alot!
Last night my hips hurt, my shins, and for the first time my hands -every digit on my hands hurt. I took a strong percocet and 6 hours later in the middle of the night had to take another one.
I know it had to be the weather as the last time I hurt this bad it had snowed that night and last night it snowed again for the first time in a month. There is something up with me when the barometric pressure falls.
I am switching back over to Tamoxifen this next week but I remember having horrible joint pain with that pill also. All I can say is 3 more years, 3 more years. This really sucks at times.
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I have to say the side effects are REALLY starting to make themselves felt. The hot flashes are just so nasty, but are a TEENSY bit better since I've really cut down on the sugar (since the 1st) and the joint pain in my hips is steadily getting worse. I've been getting on the treadmill every night for 15 minutes (about all I can do), and I've been doing that since the 1st as well.
I see my oncologist Wednesday, and we'll talk about Effexor, and quality of life. It doesn't help that my back pain still hasn't abated. Grrrr.
Achy hot purrs,
Jenn
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Hi All,
I am sorry so many folks are feeling out of sorts and in pain! I am starting to really focus on my diet and like so many others before me have said, it can really help. I drank and ate a lot more than usual during the holidays so I was really feeling extra stiff. I also got very little exercise with all the extras that go with Christmas, especially with 2 children and entertaining families on both sides of the aisle. My bones ached more and more.
Sine the new year, I cut out most sweets and most alchohol. I only have a bit of wine now - no hard alchohol, although I know that I will have to try a margarita come summertime. I feel so much better!!! For the first time since I started Arimidex, I haven't taken an NSAID in 2 days. Really amazing results. That doesn't mean I don't feel like a 90 year old if I sit too long or that my new nobby nuckles are gone. I still have high cholesterol and weakening bones. (my bone scan showed much thinner bones in just one year!) I will see my onc next week and see what he has to say, but I imagine since I am not yet on the verge of osteoporosis, he will keep me going.
Still, don't give up hope that you can find the mixture of rest, food and medications (I will take an NSAID or pain pill or sleeping pill in a nano second if needed). Hang in there.
I just want to add that last year at this time, I was a about a month past active treatment. I had terrible neuropathy in my hands and feet from chemo and no hair. I was also anemic - could barely walk down the drive and back. This sure beats that!
Happy New Year!! Beau
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Post chemo hair growth is stunted on Arimidex. My hair never grew this slow. 2 months post and not on legs, armpits, facial, and most importantly, slow, no very slow on the head.
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Post chemo hair growth is stunted on Arimidex. My hair never grew this slow. 2 months post and not on legs, armpits, facial, and most importantly, slow, no very slow on the head.
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My butt is hurting big time from the 30+ mile ride I did today. Plus tons of cyclists out there. So suspect overindulgence was extremely common. Generally, the path would have been empty when drizzly and chilly. Not today!!!
I did take NSAIDS in the past 2 days, but because I visited the dentist and had a deep cleaning. Otherwise, all is well. (Except for sort butt.)
I ate a relatively healthy dinner, but did try a Chicken Marsala recipe for the first time. One of my resolutions is to try a new dish every month. Something I haven't made in decades counts here too.
Chicken breasts were on sale.
I seem to be fine otherwise other than ready for bed. Wow, was that a good dinner!!! (Had Brussels sprouts, sweet potato, and leftover wild rice to go with....plus wine.)
Todays learning: endorphin high trumps drizzle. Every single time.
I suspect I shall sleep well. Happy 2012. I am so glad I get to see this year. W/o surgery, chemo, radiation, and now anastrazole, I wouldn't be here. But I am.
That is why I celebrated as never before. - Claire
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I see my Onc and have mammo on Thursday. I imagine she will have me go back on Anastrozole to see if I do better now. The pain in my hands remains but not the severe pain in my wrists and I sure hope that doesn't return. I think I am having some anxiety because my body is acting weird and so am I.
Can someone remind me of where I can find the list of all the things we can do to counteract the SE's. I want this to work but I am really afraid of getting the SE's again. Of course I am also afraid of getting cancer again.
Love you all my sisters, Ginger
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My first post. Been on Arimedix since chemo finished 2.5 years ago. Have had and continue to have every side effect known and have found that eating and drinking in moderation helps make life liveable. Hot baths at night help alot too lol. If your not sleeping well, grab some over the counter sleeping pills and get 6 - 8 hours a night and that too will help
Would recommend taking calcium and Vitamin D as soon as you start Arimedix to try and minimise osteporosis. It can only help and not hurt you physically.
Ive found that so long as I can get 6 - 8 hours sleep a night, i can handle every ache and pain fairly well. Not sure that anything will make me feel like my body is 45 and not 90 however but Im alive and cancer free after three years which is a wonderful thing and well worth the side effects.
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Claire - once again, you've INSPIRED me to gt off the rocking chair and go for a walk. You really ARE Amazing...
Hair - yup, all ove the body it seems to be going away - except, my scalp hair is back to just how it was before chemotherapy. I won't get into those FACIAL HAIRS, esp. the long chin ones which I swear do grow overnight....still grateful ( times a zillion) for having Arimidex working for me...
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cowgal and balsie:
The MELT is still working great for me. No pain in my hands and left foot.... NO PAIN..... and decreased it in my right foot from an 8/10 to maybe a 2-3/10. Stiffness is still there but much improved. The neat thing about it is you can tailor it to what you can do. The optimal position is leaning on your hands from the "all fours" position, but you can do it in a chair and lean on a table in front or on the side without compromsing overall benefit from what they told me. For the feet, I stand and use a door frame for balance. I also have noticed an improvement when I exercise. I feel less old, creaky and stiff!!
As for my hair..... UGH!! It's really thin and I can't really do anything with it. I keep it shorter and try to use my curl for volume. At least I have that. It depresses me sometimes, but I focus on the fact that I used to have none and that was way worse! I would love any suggestions for hair health. I currently use Wen and I may try the new line from Aveda for "thicker, fuller hair."
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P.S. I also have trouble with getting quality sleep. Very restless and wired tired. I am currently trying melatonin... anyone try this or have any feedback? My acupuncturist and onco nurses suggested it.
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Lyncerock~ Interesting I need to do this. My hair seems fine, I have always had really thick hair and it seems to be the same , howevere my eyelashes use to be long and full and that is just not the case anymore. I too can relate with the sleep thing and have tired ambien and melatonin. Melatonin I have to say I feel better the next day but ambien gives me a better nights sleep. I am really trying to exercise and not take anything for sleep but sometimes I just have to give in especially on Sunday nights. We will get through this girls we will!!!!
Be Well
Balsie
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Darn Arimidex... had to break down and get my rings resized
Also joint pain is getting a little worse - especially when I sit still for any length of time.
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The DeQuervain's syndrome in the wrist of my left hand is getting worse., especially when I awaken in the morning. Unfortunately, embroidery is one of my favorite hobbies--probably not helping the situation. It is still better than a recurrence of BC though. I will see an orthopedist if the problem keeps up.
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I got my rings re-sized this summer because of the swelling, it sure was expensive but what I did was sell some old gold and used that to pay for the resizing.
Nancy
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Lyncerock....One of the reasons I exercise is because I sleep ever so much better. "Wired tired" describes how I felt during chemo because of the decadron. I would go for a walk, and felt ever so much better afterwards.
I think our bodies need movement and protest when they don't get enough. I know I need the minimum of a one mile walk daily. I usually do more, especially on weekends.
Sunflowers....glad I inspired you. I did another ride on Sunday, and saw the most amazing skies. I did a lot of thinking both days and put together my New Year's Resolutions. Lots of places I want to visit on skis or bicycle. I did have a funny thing happen. I stopped to talk to some cows who were in a shed for the winter. Another cyclist stopped to find out if I was OK!!
Since another of my New Year's Resolutions is to cook one new dish per month, I will need to keep up my activity level. I am counting dishes I haven't cooked in decades as "new". The Chicken Marsala I just made is absolutely delish.
Hoping everyone is having a great Monday. I am so excited......my two colleagues and I are done with the white patper/journal article we have been writing!! And we will have an extract pulbished online in ten days time.
Now on to the hair. Time to get another cut, as "shaggy" does nothing for my image, and I have a professional association meeting coming up. I think it is at the point where it can be shaped nicely. That is a wonderful place to be.
Ten extra pounds are next.....but those are because I do love my food. - Claire
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Claire,
Now that I think about it I have been off my exercise routine due to a cold. I did exercise this weekend (fought through the cold symptoms) and had one of my worst nights ever last night. I took two melatonin and woke up at 2:30 a.m. I took two more and just laid awake until I had to get up to get ready for work. Watched the moon move across my window. At least I had a pretty sight. Maybe I'll notice a change when I get back on a regular gym schedule. I am also in the middle of a trial on Femara. It has only been a month but I think my sleeping and my hair is worse than on arimidex. I have to use a lot of mascara. I barely have any eyelashes. They looked better and thicker when they were growing back in from chemo. I may ask to go back on arimidex. I so want to feel balanced.
Lynne
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MamaV,
I don't know if you read my previous post about a self treatment I have been trying called MELT. It has really worked wonders for my hand pain. Google "the MELT method" and see what you think.
Lynne
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Lyncerock.....If you had the same creeping crud, it is the pits so hope you feel tons better soon.
I had problems sleeping some nights because of the nasal stuff. Plus, I had a low grade fever and body aches. This went on for about three weeks. Only this past weekend did I get my game back on. Now I feel terrific.
I can't help you on the mascara. I use YSL in electric blue. I never did have great lashes, and can never compete with a Hereford heifer I talked to a couple of years ago. She had the most spectacular long white lashes.
Anyway, wanted to let you know that the symptoms could be cold-related. I can't take any cold meds either, as they make me feel like I am crawling out of my own skin. So another approach might be to nix the OTC stuff and replace with a garden-variety hot toddy.
I suffer through with such stuff, herbal tea, and aspirin.
BTW - hair tends to look like sh*t when you are sick. Part of the deal. I was washing mine all the time as was getting soaked from fever/sweats. So hang in there. I am betting most of this is because you have this bug. - Claire
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This is especially for Claire, I know people who talk to cows too ;-) A friend sent me this in an email, and I sent it to all the farmers living in my small town. Lots of smiles.
It seems to stop & start a lot - don't know why...how you can see the whole thing:
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This was great. Cows are very curious creatures, so I am not surprised they came up and checked out the jazz players.
Starting and stopping is a bandwidth problem. Either slow internet speed or a lot of people on at the same time. I was fine watching it. Actually, there is a new super-speedy internet offering here in Seattle. This is essential for "on demand" television/movies and streaming.
I have another funny cow story. I attended college at the height of the theories about "behaviorism". I never believed it, as all our cows had distinct personalities, and I couldn't see any major differences in the way we treated our calves.
I said as much to my fellow (very urban) college students. You can only imagine the sneers, giggles, and stares I got back. But I was right. I have seen this in my own family where two members who had minimal contact in their lives shared very similar tastes or talents.
Not chance. - Claire
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UGH! My foot is hurting from bunionectomy. I saw the surgeon yesterday, 5 days post surgery. He reiiterated that I have soft bones. i asked him what he meant by that and he stated that when he used a saw to cut through my toe, the bone was very soft. I told him to talk to my onc. She has checked my calcium, vitamin D and PTH and all were within normal limits. My vitamin D is very good. My calcium runs on the high side of normal and she didn't tell me the PTH level although I will ask at my appt. in February. Gosh I feel like I have to be my own doctor again! Figure it out people! Do I have soft bones or not? If so, what's causing it if all those blood levels are normal?
As for staying on Arimidex, my onc is for going beyond the 5 years if the data proves it's helpful. Her mom is a bc survivor and has taken it for 8 years. Her mom is also an onc. I'm willing to do whatever it takes, but please tell me that my bones will hold up a while longer. I'm only 51!
Mainer - I feel so badly about what you have been going through with the lousy care. My onc has no intentions of dropping me after 5 years. She is very dilligent and thorough. I hope you can find better care with a second opinion.
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