Doing Well on Aromatase Inhibitors (AIs)
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bella, some of the young doctors are really good, don't let that stop you
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<miranda--pretty sure "NP" is nurse practitioner. And FWIW, I've been taking Biotin pretty much since dx. Not sure how much it'll help on this end, but I do feel like it'll help hair and nails grow back healthy after I've finished chemo.>
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Bella - I think trusting all members of your team is essential - we are in for a long journey, especially if we are taking AI's. You need to get access when you have questions or concerns. Things for me have been seamless - from the time my Primary called at 7:00 at night with my biopsy results. I am least impressed with the "nurse navigator" but have always gotten prompt phone call returns from my MO's PA.
When I had brain surgery 11 years ago, my neurologist said "you don't want the top dog - you want the young and hungry one who has just been trained in the latest techniques." That has also been my personal experience. My husband had hernias repaired by the chief of the department 40 years ago and they have never healed properly and my BFF had her bladder nicked during a robotic hysterectomy). I also know that some argue for the biggest medical center you can access but I feel my treatment has been more spotty (and considerably more expensive) since my group practice affiliated which Honor Health and the Virginia G. Piper Cancer Center here in Phoenix.
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Thanks for the clarification, Ingerp.
I used biotin some years ago for hair and nails, and it seemed to help -- hopefully it will help you too.
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Hi everyone, I'm sorry to hear of the lack of concern with members of some of the healthcare teams. As a nurse for 35 years and still LOVING it makes me sad to hear that. My daughter just started her first RN position. Try to tell her not to focus so much on "skills" , they will come with time, practice, and can be taught. Caring, LISTENING, patient advocacy, following through, and providing resources to your patients are most important. That's what comes naturally and is a gift when you find yourself in the care of someone with those traits. Always be your own advocate. As previously mentioned this is a long haul for all of us. Agree 100%, don't let the young ones scare you away either! They can be much more current and proactive in wanting to get to the bottom of things. Keep asking your provider then look elsewhere to get what you want if needed. That in turn will help with piece of mind. Well, I picked up my arimidex from the pharmacy and it made it to my counter!! Ha ha. I will just look at it for the next week as I flush this chemo out of my system! Hope everyone has a great day!
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It's funny how many of us fill that prescription, then look at it for a while before starting.
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For anyone considering biotin or taking it for hair/skin/nails, you can go up to 5,000mg a day. I was told to start at 2500 and if I didn’t start seeing results to up it to 5000. Natrol makes one that is 5000 in just 1 capsule. We already take so many pills I look to consolidate as much as I can!
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For those of you who are staring at your AI prescription - remember that for most of us, the experience is manageable and they do make a difference for many. If you have too many SE's from one, try another. Or even a different manufacturer. It's my understanding that the time of day you take it doesn't matter, but being consistent does. I take it first thing in the morning with my thyroid pill but others have found other times that make it easier to remember.
Little things - I have continued taking biotin (and my nails look great) and using biotene toothpaste and mouthwash. I take generic claritin (never can remember the name but you can find it next to the claritin at your pharmacy). I have continued to take the glucosamine/chondroitin and Calcium with Vitiamin D that I was taking for my arthritis before BC, all with the MO's knowledge. It's a lot of pills but I feel good. For me, being active really has made a difference in the aching joints. I fired up my fitbit and are "friends" with others from my "started chemo Feb 2017" group. Don't forget to hydrate, especially as temperatures rise.
I personally decided that at age 75 and 72, DH and I weren't prepared for major diet changes but I know many do that. There are threads here that discuss diet options and share recipes. Others have found massage or acupuncture helpful.
So jump in.
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Hello All,
Sorry for any confusion. NP was to mean Nurse Practitioner.
Here is the rosemary that I purchased from Amazon:
Rosemary (Large 4 ounce) Best Essential Oil
Sun OrganicI just rub it into my scalp and my eyebrows. I forgot to share that the NP at the dermatologist's office used a magnifying glass of some sort and said she saw thousands of baby hairs in the eyebrows where they have thinned. I am going to hold off on the microbalding and see if these hairs come in.
As for the question about biotin, I take the minimum. I don't want hair on my legs or underarms again.
Finally, I have written before about trusting our guts in our medical relationships. At some level we all know when the relationship clicks or not. My Breast Surgeon said that there are three essential qualities for a good doctor. They are:
Ability,
Availability,
Affect-ability.
Those are what I now look for.
To those not getting the care or getting loss in the system, I am so sorry. I hope things can turn around for you.
DebAL ... it must hurt as a lifelong Nurse to hear how some of these relationships are not the best. Great advice to your daughter.
Miranda ... it is funny how we get the Rx and wait.
Coach Vicky
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Waiting for an ultrasound. My NP ordered it. When she got my message about the vaginal bleeding after 17 months of nothing she wanted to see me ASAP. Actually saw me on her lunch hour.
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My NP is awesome!! She specializes in Women's Health and she listens to what you are saying. She called me herself to tell me I had BC. It was Christmas and the office was closed.
I will know something tomorrow by noon. The tech was not able to find my left ovary. I told her I couldn't remember the last time I used it. She didn't smile so I guess it wasnt as funny as I thought it was. She asked if I had ever had a CT scan and I've not so maybe I'll be getting one. I told her I had a tubal 24 years ago and I know that bands were put on both tubes so I'm assuming I have a left ovary. Now let's play the waiting game..I'm not very good at it!
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I thought it was a funny line and would have laughed!
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Nailtiques is great for your nails and come in different formulas. I buy mine at Ulta.
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Coachvicky - Hadn't thought about the fact that Biotin for head hair and nails would also encourage hair on legs and elsewhere! (I am taking 5000mcg.)
Too late; although I am happy that my head hair and brows are filling in, I am sorry to see the return of hair on legs and upper lip.... Guess we don't get to choose!
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Just an FYI regarding biotin supplements:
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I think I forgot to tell you the good news from my appointment with my NP...I have lost weight! That' since I started the Anastrozole in March. I hope the Tamoxifen does not put it back on me! I have dropped a while size!
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That's great Vargadoll!
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Yea, Vargadoll! I know you get a LOT of movement during your days so that will help a LOT in keeping the weight off.
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Ruth- I am nonstop from 5:30 am until "pumper time" ( my Flexitouch pump ) I just hate that I was switched back to Tamoxifen. Hope to hear my ultrasound results today. Waiting SUCKS! In the mean time ...I shall shop for summer clothes!
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I sure wish I didn't have to shave my legs! Of course I was one of the unlucky ones that had to shave all through chemo.
I've been on Anastrozole (Arimidex) since March of 2015. My side effects have been minimal. Stiffness first thing in the morning or after I've been sitting too long seems to be the only consistent one. I started getting painful tendonitis in my left wrist about a year and a half ago. Switched manufacturers and it went away. My MO said he's seen SEs get better with different manufacturers but nothing this drastic.
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Just Me - Thanks for the link re biotin's potential interference with lab results. My MO knows I am taking it, but I will have a conversation with her about this during my next appointment. And possibly switch to a lower dose.
Vargadoll - Congrats on the weight loss, since it sounds like you are happy about it! It's good news for me, since I have also been happy about dropping the 10-12 pounds I always wanted to lose over the past 6 months and was worried that Arimidex would cause me to gain it back.
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Vargadoll ...you go girl! Down a dress size!
Mommato ... I have trigger fingers. I am pretty Arimidex has effected this but did not cause this. My Ortho Surgron wants to do surgery. Breast Surgeon said no way as long as I am on Arimidex as its effect on a surgically altered tendon is unnown.
I am in physical therapy for my hands. And it is working! My fingers are not catching. PT might help with your stiffness. Just a thought.
Vicky
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PT has been a godsend for my stiff hips. I was surprised but it has really helped. I too am still stiff in the morning or after sitting at my desk too long but at least once I'm moving, I'm good.
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smwusaf ... My Physical Therapist said the PT is too often seen as an after thought to correct an injury istead of being used upfront as a preventative.
Glad yous is wokring.
Vicky
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Coach, the tendinitis is definitely a SE of the Arimidex. I had it off and on with both my elbows in the first year. It eventually resolved itself. Thankfully the wrist no longer bothers me either. I was ready to make a switch to another AI because the pain had gotten so bad. PT never crossed my mind. The stiffness goes away after I've taken about a dozen steps. Not sure I want to add more doctor appointments.
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Vargadoll - sending good thoughts. What a great PA. My primary called me about 7:00 at night to tell me about my diagnosis and had names and numbers for referrals to give me right then. Then called the BS to move things along. RO and MO worked with me so I could take a scheduled trip to the east coast to be with my daughter who had scheduled surgery. Those kind of practitioners are priceless! I am so sorry for those of you who don't have them.
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Good afternoon everyone. Update: my arimidex is on the counter AND out of the bag it came in! Progress! Wondering, Are any of you taking claritin regularly with your AI? It sure helped ward off joint pain during my neulasta shots and i thought i read about in on one of the threads. Thanks and I hope everyone has a great weekend!
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WOW DebAl ... that is progress! Now you just have to come up with something to say to yourself so you can get the pill in your mouth!
I take something like Claritin.
Vicky
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i take claritin. Did before cancer too so have no idea if it is having an effect on side effects of aromasin
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