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Preparing for AI

Jewelweed
Jewelweed Member Posts: 46

So I will be starting on Aromasin in about two weeks, and though I am doing my best to stay positive, I am nervous as all hell.

I have already started on a regimen of exercise (daily walks and some running, lifting kettlebells, etc.) and vitamins (everything I can think of including fish oil and turkey tail mushroom supplements). I already eat a healthy diet loaded with veggies and fruits, and I am paying close attention to upping calcium and vitamin D (Greek yoghurt is my friend).

My bones are already well on my radar, but I am also deeply afraid of hair thinning so I thought I might get a head start now on taking biotin and hair vitamins. Do you think this would help? My hair is a treasure-- thick and luxurious, and though I am fine with the type of thinning that just happens gradually as you age, I am petrified by all the stories about peopl losing 60% of their hair or experiencing male pattern baldness.

Vaginal dryness and atrophy sounds like a nightmare-- should I start looking into Mona Lisa laser treatments now? Are there any products that might help head that off at the pass? What will help keep my nethers happy?

My oncologist is of the opinion that I am unlikely to gain a ton of weight or seeing high blood pressure or cholesterol given my health nut tendencies. I hope she is right.

What else will help? What else are people doing in advance of SEs that might lessen their impact?

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    jewelweed,

    Although I think it’s good to look into ways to mitigate se’s, especially exercise, don’t assume any or all of the possible se’s will happen to you. I have been on all of the AI’s, currently Exemestane, for a bit over ten years. I do have joint/bone pain which I manage. I have not gained weight nor had any hair loss. For most of those ten years I worked full time in a job that kept me on my feet. That’s it! Rather than go into it expecting to experience the worst, why not just wait and see how you do. I know it’s comforting to read the experiences of others but why not go into expecting to not have problems rather than deciding you will? Just a thought.

  • Jewelweed
    Jewelweed Member Posts: 46

    I do tend to overthink things.... Sigh. Thanks!

  • Jewelweed
    Jewelweed Member Posts: 46

    And also: I am so happy that this worked out so well for you!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    Thank you! In terms of my longevity, I am definitely an outlier. It is sometimes hard to figure out where to go with bc as there are so many variables, both in the disease and the individual, I have no clue why I’ve not only done well but had a fairly easy time with only a couple of bumps. Although I educated myself well along the way, I tried to put little weight on individual anecdotes or the reactions others had to tx because I learned early on how individualized and unpredictable bc can be. This allowed me to go into my treatments with a neutral mindset with respect to se’s. Yes, I’ve had the joint/bone pain but I pretty much carried on as normal right through to my recent retirement. BTW, I have a head full soft, loopy curls which appear not to have suffered at all. I think you should relax a bit and be aware but don’t assume you will have awful se’s. I should also stay that at stage IV, I am highly motivated to stay on this class of drugs as they appear to have kept me alive for a decade.

  • hippmark
    hippmark Member Posts: 79

    Hi. I have no idea if this will help or if you would even need this. But I lost hair due to a Lupus flare. Some of it permanently, but that is due to Lupus scarring.

    I had PRP injections in my head and my hair stopped falling out. I was stunned. Now, I have no idea how that could or if help while on Hormone Therapy. But, if you are looking for ideas to add to your arsenal, it could be worth a look IF you need it. I also take a lot of Bioten.

  • Jewelweed
    Jewelweed Member Posts: 46

    My dermatologist mentioned PRP-- it's spendy, but I would absolutely go for it if needed. I've heard it is very effective!

    Has anyone else out there tried this?

  • hippmark
    hippmark Member Posts: 79

    Yes, it can be spendy. Mine cost $2,000 the first year. A $1000 per treatment. Went back 6 months later for another. Then, I went for 2 years every 9 months. Then I stopped because my hair was not falling out at all. It saved my hair from Lupus.

    I have read that it is NOT good to treat breast cancer. I mean as injected into the breast. Because it grows cells. But, I don't believe it travels from your hair to other places. It is strictly given into the area needed. Very localized. I will also look into this after I finish the course of my chemo treatment.

    I realize my hair should be the least of my concerns. But I am trying to maintain anything I can to keep my spirits up!

  • Jewelweed
    Jewelweed Member Posts: 46

    I'm confused-- why would this not be recommended for breast cancer if it stays localized?

  • BCinfoseeker
    BCinfoseeker Member Posts: 31

    I just started on Anastrozole about 7 weeks ago. Minor tingling in feet. Taking biotin and using biotin shampoo every other time. So far so good!! I never want to say "you'll be fine" but I think that we hear way more about problems that people have rather than success stories. Good luck xo

  • Jewelweed
    Jewelweed Member Posts: 46

    Music to my ears! I love hearing from the folks who are doing fine on AI. Thank you!

  • elainetherese
    elainetherese Member Posts: 1,610

    Hi!

    I've been on Aromasin for over 6 years. I have not lost any hair. It was straight and stringy before Aromasin and it's still straight and stringy. I did develop full-blown osteoporosis, but with Prolia, my bone density has improved. Aromasin also made me feel moody, so my doctor prescribed a low dose of Celexa. I have gained weight, but it's my fault. I love to cook, and alas, I love to eat what I cook. I don't take any supplements other than calcium + Vitamin D. Good luck! It's just a pill.

  • mle42
    mle42 Member Posts: 124

    Jewelweed, I know there are a lot of potential side effects that we can be worried about, but when I started researching endocrine therapy (will start in January), I was also very comforted by this thread: Doing Well on Aromatase Inhibitors. I think there is a lot of truth to what was mentioned above - people who have a hard time or bad side effects are far more likely to post than those who have no side effects. I do not at all intend to minimize those very legitimate and incredibly difficult experiences, and it's always good to be prepared and know what might be coming, but I also think it can scare people unnecessarily.

    I asked my aunt (who was diagnosed with BC about 4 years ago) how her side effects have been on AIs. It took her a few minutes to figure out what I was talking about, because for her it's just one of her daily pills that has about as many side effects for her as a multivitamin (aka: zero).

    Which is why, after being really worried about the impending SEs that I'd have to live with for 5-10 years.... I decided to quit borrowing trouble and just take it as it comes - SEs may never be a problem at all, and if they are, we will deal with it or try a different AI.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    “Which is why, after being really worried about the impending SEs that I'd have to live with for 5-10 years.... I decided to quit borrowing trouble and just take it as it comes - SEs may never be a problem at all, and if they are, we will deal with it or try a different AI.“

    Mle42,

    Wonderful statement! Like you, I don’t want to minimize the very real se’s that some people have. I find it a bit perplexing that members who are just starting or considering AI’s go into it assuming they will have every single se to the worst extent possible. I was certainly aware of the possibility of se’s but I went into it with a neutral mindset. Yes, I do have a few se’s but they are manageable and I’m alive. And that QOL that so many speculate will be destroyed before they even start taking the meds? It’s been 10 years for me, and my QOL is still worth every little pill I’ve swallowed over that time. So don’t decide that it’s going to be awful before you even try!

  • muska
    muska Member Posts: 219

    Eight years on Anastrozole. The hair is as good as ever, just dryer. I wash it less frequently and use moisturising shampoos and conditioners. Same with skin- it’s dryer, so I use quality moisturisers more often. That’s the extent of the seriousness of the SEs I have experienced

  • hippmark
    hippmark Member Posts: 79

    I apologize for not getting back to you sooner Jewelweed. I think it is because it might, just might travel? I'm not certain. I would ask the Doctor. I would think it remains local, but I don't have the knowledge to tell you that is a certainty! But I would consider it again if I needed it!

  • lillyishere
    lillyishere Member Posts: 748

    muska, do you mind sharing the shampoos and skin regimen you use? I am dealing with thinning hair and also very dry face skin.

    Jewelwee, it seems that you are doing all the right things. I wish you a smooth transition to AI.

  • Jewelweed
    Jewelweed Member Posts: 46

    I'd like to hear more about hair and skin care. I just started on hair vitamins and Prose hair products, including a scalp mask. I use coconut oil all over my body in winter.

  • jen2957
    jen2957 Member Posts: 75

    Hi, all! This topic instantlygrabbed my attention, since I am slated to begin exemestane next week. I had my first Lupron injection last week. I have been researching side effects a bit more lately to determine whether I should ask my MO if I can safely wait until after Christmas to start the exemestane (about a week later than planned). Since I just got the Lupron on board and haven't yet had any noticeable SEs, I would like to give it a little time to be sure none come along in the next couple of weeks.

    But honestly, my biggest reason for wanting to wait until after Christmas is simply so I can focus on family instead of breast cancer for just one week. While I may end up having zero side effects, I don't want to have to take a risk of feeling crummy from a new med over the holiday. I just want a short little breather after having surgery 10 days ago (to re-excise and confirm clean margins), starting Lupron last week… then to this week getting follow up liver scans, filling my TE, and meeting with a gynecological surgeon about oopherectomy (I only have one left as it is and my MO thinks at 51, it's a good option for me so I can stop the Lupron)…then after this week, possibly getting CT mapped for rads…then it will betime for another Lupron and my first Zometa infusion.…can a sister just get a mini-vacay from the cancer dance card????

    What do you guys think- have any of you adjusted start dates a little? Did it go well? Will postponing starting my exemesatane one week really make a significant difference do you think?


  • jen2957
    jen2957 Member Posts: 75

    I also wanted to chime on the hair question. I have been taking biotin and using Rogaine foam for over a year now bc I noticed my part was getting a little wider and maybe more transparent- some from having lighter blonde hair with some gray roots that show scalp more easily, but some because I turned 51 this week and am starting to drift closer and closer to menopause, so my hair is slowly getting a little thinner than it was.

    I also discovered Olaplex products and they have made a huge difference in my hair's health- very little breakage now. It used to be a salon only treatment, but they created an at-home version during the pandemic. I also bought a HairMax laser hair comb this week. It felt a little like I was “drinking the Kool-Aid,” but I did run down some actual studies and lots of reviews that showed some positive results. There's a six month return policy, and there is a 25% code specifically for breast cancer patients somewhere on this site, so I figured it was worth a try. I've used it one time, so I'll be happy to keep you posited on how it works. If it's a bust, I'll let you know that, too!



  • rah2464
    rah2464 Member Posts: 1,192

    On the hair thing - yes the laser combs/helmets do help as does nutritional supplementation. I have also begun using a scalp oil that contains rosemary leaf extract. In a study it was slightly more efficacious than Rogaine. I use a couple of dropperfuls at night twice a week, then wash out in the morning.

  • threetree
    threetree Member Posts: 982

    Jen2957 - I was supposed to start taking Letrozole, in early December of 2019, after finishing up radiation in mid to late November 2019. I simply couldn't bring myself to do it over the holidays, so I waited until mid January to start the AI, and I have no regrets whatsoever. It's only been about two years for me now, on the AI, but so far, so good, and I've had no new anything. I had a large ER/PR positive tumor, but I don't think waiting a little more than a month made any real difference. The radiation caused a lot of fatigue and by Thanksgiving I was starting to feel a little bit better and had a nice day out with family. By Christmas I was really starting to feel more like my old self again and had another good day with family. The two weeks between New Year's and mid January when I actually started the Letrozole, I really was my old self and had so much hope that there really was "me" still in there somewhere after all that chemo, surgery, and radiation, that it left me with some strength to go on and keep at all of this. I am so glad I had that time between mid to late November and mid January to get back on my feet enough to know who I really still am deep down in there under all these treatment side effects. Immediately after starting the AI, I began to get all the classic side effects and still have them, so enjoy a little holiday time while you can. Hopefully you will be one who doesn't have any or much trouble with the AI, but I think it is less common.

    Also, Covid came along the next year and I was not able to see my family, and there have been difficulties this year too, so again, I am real glad that I had the good times with family in 2019. I really don't think waiting will cause any problems for you. Many doctors approve breaks for people anyway. I saw a recent study where they gave people 3 months of each year during their 5 year treatment off; all except the last year. There was no difference in outcomes re overall survival when compared to those who took it year 'round without fail for 5 years. Just one study, but given that and the fact that many dr's have people take month long breaks before switching to another, etc. makes me think it's probably OK to take the time, but I'm no expert.

    Enjoy your holiday!

  • lillyishere
    lillyishere Member Posts: 748

    Jen2957, almost 2 years ago, I was told to start AI (letrozole on my case) 6 weeks after Lupron. Check with your MO if this guideline is still legit.

    Thank you so much for your recommendations for hair. Good luck with the treatments. May they be gentle and effective to you.

  • margun
    margun Member Posts: 385

    i was taking calcium and vitamin D . Still I got diagnosed with osteoporosis. My doc prescribed a med to prevent further loss but I am worried about things I read. Hopefully some of you had overcome osteoporosis. . Any advise how to improve things besides meds?

  • threetree
    threetree Member Posts: 982

    Margun - I too have osteoporosis and am trying to manage this without the bisphosphonates. I have been taking the AI (letrozole) for almost 2 years now, and I've had two dexa scans. The first one I had showed the osteoporosis and the dr suggested the drugs. I suggested waiting awhile to see what happens. In the meantime I started eating 6 prunes a day (there is research online and other postings on these boards about this), using about 2-6 TBSPs of first cold pressed extra virgin olive oil every day (I just work it into my diet somehow and again there is some research online), continuing with the green tea, and walking for about 40 minutes every day, taking the stairs, etc. A year later, the second dexa showed no change, i.e. nothing was worse and all I was hoping for was "same or better". I am continuing with this regimen but don't have another dexa scheduled for about 12 months, as I think Medicare only covers them every two years. I also fell while out on a walk in July of 2020 (just shortly after being diagnosed with the osteoporosis). I went all the way down totally flat and hard on solid cement and nothing broke; just a couple of knee bruises, so I think something good is happening. I'd been doing the prunes and all for about 8 or 9 months by the time I fell.

    There are other posts about this subject on these boards. You might be particularly interested in the posts by Ruthbru. She said she got through her 5 years of an AI by eating prunes daily, dancing, walking, etc. You need to do some sort of aerobic and "pounding" sort of exercise to help strengthen the bones. I also take vitamin D3 with K2. The K2 is supposed to help get calcium to your bones. I've had stomach upset with calcium supplements, so rarely take them, plus I've heard/read that that calcium from supplements can just sit in your arteries and heart and not really get to your bones anyway, so I am trying to get calcium from food: sardines and salmon with bones, several times a week; daily yogurt, lots of green leafies, e.g. collards, spinach, and mustard greens as they have some calcium plus a lot of vitamin K again, that helps move it to your bones. I've only been on the AI for 2 years and so don't have a good time span to share, but so far, so good without bisphosphonates.

    I really try to do what I can without all the meds and I know others do to. Best of luck to you!

  • margun
    margun Member Posts: 385

    thanks ThreeTree for your tips.

    The prunes you are eating fresh or dry? What is the reason you want avoid bisphosphonates? Any se known or just we all have enough meds in our bodies

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    margun,

    Prunes are always dried. Fresh prunes are actually plums! There is a specific variety of plum that is grown to be dried and thus become prunes. The prune industry has been trying to change the name from prune to dried plums but it doesn't seem to be catching on. Before the Silicon Valley became a high tech Mecca, we were known as the Valley of the Hearts Delight because we produced so much stone fruit, including plums for drying.

  • Jewelweed
    Jewelweed Member Posts: 46

    I buy agen prunes by the sack:

    https://www.lacompagniedespruneaux.com/en/?gclid=C...

    They are the sweetest and tastiest I have ever come across. Very delicate and juicy. Pure decadence!

    I hate the word "prune" though. Sounds wizened and bowelbound. They need a better name.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453

    jewelweed,

    It’s for that reason that they have been trying to change the name from prune to dried plum. The effort hasn’t been too successful as I guess the word prune is too ingrained in our vocabulary.

  • threetree
    threetree Member Posts: 982

    Jewelweed - "wizened and bowelbound", love it!

    Margun - I don't want to take the bisphosphonates for "all of the above" reasons. I don't want any more drugs in my body than necessary, I fear the jaw necrosis problem, and I understand the side effects from the infusions can be awful, even if just for a few days. I don't need anymore of this "just for a little while", "just for a few days", "it only take s a few minutes", "just do this, just do that" stuff at all! I find that cancer treatment is full of all that sort of thing, largely with respect to dealing with treatment side effects.

    And like exbrnxgrl says, prunes are dried plums and there is a big push to start calling them "dried plums" rather than "prunes", in an effort to dump the old stereotypes of old people eating them for their bowels, as they have so many other redeeming qualities.

  • threetree
    threetree Member Posts: 982

    Jewelweed - Are you in France or do you just order these from France. Is there a US outlet that sells these? Once I saw that they are organic, I got interested. I get my usual ones from the local natural foods/organic coop here, and they are actually fine, but once in awhile they are out of them, and sometimes I just like to have a lot of extra on hand "just in case". I really like them and think I would continue to eat them even if I didn't take the AI.