Aromasin and weight gain, now I know Im not going mad...
Hey all, I had to share this as Ive thought I was going mad all these years, but now I know I'm not. I finished my treatment for my 2nd diagnosis in 2015 and was placed onto Arimidex, I was then changed to Aromasin. Post chemo I put on 6kg, this has blown out into 8kg now, to many they would say it wasn't much. However, in 3yrs I have tried EVERYTHING! exercise and diet, I would lose a little but it would reset itself back or more and now I know why. I am stuck on this for a further 2 yrs after discussions with my Oncologist, but Im upset that this is not discussed in depth with patients. I say this only from the point of full knowledge and understanding, not as to whether I would take it or not. This is purely for knowledge and knowing WHY I cannot get this weight off and so I can stop blaming myself and beating myself up. I will still continue to exercise and watch my diet, eventhough I know whilst on this medication not much will change, knowledge is just power isn't it? in a way Im relieved. Its hard to not get caught up in this post recovery of finding your new normal, but it doesnt help when we aren't told everything. There is light at the end of it I hope LOL Exemestane (AROMASIN) is a steroidal Aromatase Inhibitor (AI) Your extra weight may hang around and increase after chemotherapy if you also take hormonal therapy (tamoxifen or an aromatase inhibitor). If your body shifts into menopause because of chemotherapy, there's a tendency to gain weight. ... It's important to know that the hormone estrogen suppresses LPL activity on fat cells. The enzyme lipoprotein lipase (LPL)plays a major role in the metabolism and transport of lipids, and consequently is a participant in the development of obesity•One of its roles is to remove triglycerides from the blood for storage in both adipose tissue and muscle cells.••Enzyme activity may also explain why some people who lose weight regain it so easily. After weight loss and weight stabilization, adipose tissue LPL is increased and its response to meals is heightened.•People easily regain weight after having lost it because they are battling against enzymes that want to store fat. Fat storage is efficient, and fat oxidation is not•The activities of these and other proteins provide an explanation for the observation that some biological mechanism seems to set a person’s body weight or composition at a fixed point; the body will make adjustments to restore that set point if the person tries to change it. Hope this helps others understand why they can't shift that extra weight post treatment and know you too ARE NOT GOING MAD!!! Hugs everyone, am wishing 2 more years away as currently am 8yrs on combined medications and had enough! xx M
A side effect Chart for most of the Hormone/AI tablets ... on one page
I found this chart a while back, when researching Hormone Therapy/AI side effects - and thought this a good one with most of the oestrogen blocking meds on the one page, in groups, & showing 'most' of the side effects in an easy to read format. Please note - I wrote the 4 'boxes' of info along the top - with the alternative tablet names and explanations of the different groups of tablets. If you have MORE symptoms than listed here, feel free to add to the list in the comments below! (I can even add more dots if you like!) For Aromasin/Exemestane - I can add: Dry Eyes Extreme Hand and thumb pain Hand and thumb weakness - inability to hold/open things - I can't even tear open an envelope! Weight gain Occasional Back Pain (that I will be keeping an eye on!)
Anastrozole
hi, live been on Anastrozole since May 2017. I had hormone receptive BC, chemo, double mastectomy and oopherectomy (also BRACA2 ). I've been having a lot of side effects which I put down to Anastrozole: confusion, weight gain, lethargy, fractured ankle,joint pain and stiffness, as well as bouts of depression. I'm considering speaking to my oncologist about changing to Tamoxifen. I'm just wondering if anyone has had similar issues on Anastrozole and if you changed to Tamoxifen? Any advice would be appreciated.Having a 4 week break from Exemestane/Aromasin ...... who else has done that?
I saw my Onc yesterday, who has suggested that I have 4 weeks off Exemestane from yesterday - to see if the hand aches (in particular) 'lessen' and to see how much of the pain may be attributed to arthritis (which I know I have - but was never at this level of pain) or a direct result of the AI. I know a lot have had a break from Letrozole ..... who's had a break from Exemestane/Aromasin? Up til a couple of months ago - I was happy to go onto ANYTHING ELSE to give a go - to lessen the side effects ..... but in recent weeks, most of my other side effects (particularly the hot flushes) have abated, so the remaining problem was really the hand pain and some hip/knee (which I had to a small degree before being diagnosed with BC.) It will be interesting to see how quickly the pain lessens & by how much. Currently, it wakes me up often during the night - and I have it all day. In the morning, my left hand fingers in particular just won't 'bend' until 1hr+ after getting up - and also trigger finger in my thumb & middle fingers. I currently can't use my thumbs to pull up trousers or disengage the hand brake in the car ..... and a myriad of other day to day things - but if I had to go onto another AI or Tamoxifen - and the 'pay off' would be to go back to hot flushes & other nasties ..... I am not keen to do that. I'd rather stick with the hand pain, even tho it frustrates me with both my favourite past times (Uke Playing & kayak fishing!) Depending on the outcome of the 4 weeks off AIs, I may then stay on Exemestane, or may go to Anastrozole/Arimidex (the one with the least number of side effects - but sadly still includes insomnia!) Anastrozole/Arimidex doesn't appear to affect the joints so much. If you are on it - how is it affecting you? She will ring me in 4 weeks to see how I am going & then decide which one to go with. She was not keen for me to go onto Tamoxifen (only as a last resort) as she said there is a slight chance of cervical cancer and other issues that she was not happy with. I had a bunch of other questions to ask, but bloody forgot (even tho I had them written down!) DUH!Vertigo on Arimidex or other AIs? Who's suddenly 'got it'?
Has anyone on AIs experienced Vertigo? I'd always thought it a minor complaint ..... but yesterday it hit me big-time & I felt HORRIBLE! I've been on AIs for 2.5 years (letrozole 6 weeks, Exemestane 6 months, Anastrozole 2 years) & recently had a couple of episodes at night when getting up to go to the loo .... feeling dizzy & wobbly on my legs - but it passed. Yesterday morning, it started in earnest even before I got out of bed. Dizzy, Nauseous, disoriented & 'crabbing sideways' instead of walking straight ahead ... and just feeling 'really off'! The Dr has given me Stemetil for the nausea. There is a manoeuvre called the Epley Manoeuvre - has anyone tried it, to realign the crystals in the ear? It can make you may be quite nauseous (and even vomit) so have a tub handy ... Here’s a good one for explaining why we get it …… a bit technical but the culprits, (the ‘crystals’) are mentioned about the 4min 50sec mark. https://www.youtube.com/watch?v=kx4mQB0QzvQ My sister sent me this link: https://www.youtube.com/watch?v=lbPbM8018CE Or you can have a go at doing it 'to yourself' ..... but should have your first procedure with a professional, so you know what to expect. https://cdn2.hubspot.net/hubfs/6063852/Documents/vertigo-remedy-english.pdf Or this one to show how the moving the head moves the crystal https://youtu.be/9SLm76jQg3g?t=130Oncologist checkup yesterday am pulled off Arimidex and now on Aromasin, any ladies on this??
Morning Ladies! I had my Oncologist visit yesterday, after keeping a diary at his request for 6 weeks off Arimidex and then back on, joint pain was substantial. So he said I only had 1 option, and that is to go on Aromasin, so wanting to know if any of you are on this and how you find it? He said its pretty much the same but sometimes the change is enough to make a difference. Thanks! Melinda xoxoxo
Help i feel like a robot
Been on exmestane and goserelin for 3 years and 4 years respectively. Is it normal to feel emotionless? I miss (?) the emotional highs and lows of having hormones. I do feel anger and frustration and at times stressed but joy, passion, deep love seem to have left me for apathy. Since I wasnt menopausal at diagnosis i have no reference pount to understand if this is normal for menopause or is it just the drugs? I kind of feel a bit jipped. Is this what the rest of my life looks like. Sorry to be dramatic but whats the point of it all?Maybe try Starting AIs slowly 'over time' to see if the side effects aren't as savage?
I am now 71 and have been on AIs for 6 years, with varying side effects (specially on Letrozole when I first started.) I will completely stop taking them next year - but in the mean time, I am slowly 'weaning myself' off them just now .... (hehe, to be totally honest, I forget to take them most of the time! LOL) My theory is that if they started us off with one tablet a week for a month, then 2, then 3 (every other day), slowly getting up to 1 x daily - that the body should adjust to it better! I believe there could be merit in giving this a go. We really need to 'trial' this in a controlled way! MANY women stop taking them altogether (often without advising their Oncs) but then, if they get a recurrence, they'd have the 'What Ifs' and possibly never forgive themselves. It doesn't really matter WHICH AI you start off with - the body will still take a BIG HIT when you suddenly start taking them daily ..... (tho there ARE some lucky ladies who barely have ANY side effects ....) I was not one of them. I lasted 6 weeks on Letrozole, then lasted 6 months on Exemestane - and then went on to Anastrozole for the last 5 years which worked the best for me (with MUCH less aches & pains.) Yet others may START on Anastrozole & hate it as much as I hated Letrozole!! SO ....... IF you are having nasty side effects and it IS affecting your quality of life adversely - speak to your Onc about it. You DON'T have to put up with it, Have a break for a few months. Try a different one, like I did. It could make ALL THE DIFFERENCE. Also consider asking your Onc about Medicinal Cannabis Oil - I've been taking it for nearly 5 years now - and it HAS made a difference! There are many online Drs who will prescribe it, if your Onc won't. SO .... If you are about to start out on AIs any time soon - maybe mention 'starting them slowly' to your Onc ..... to see if your body tolerates them better, as in the long term, the longer you are on them, the better it is to reduce the chance of recurrence xx take care & best wishes
Letrazole and Carpal Tunnel Syndrome
I finished my chemo late Oct. I have been on Aromatase Inhibitor almost 3 months. I have developed severe Carpal Tunnel in my left hand. I have pain at times right up my arm, sleeping is unbearable especially if l try to sleep on my left side, my fingers go numb, tingly and painful. Thankfully my right hand is not affected as l have had a carpal tunnel release operation on that side years ago. My left wrist has never been a problem until now. My dr told me that it is caused by the Letrazole. I have an appointment soon with the Oncologist, l will see what they say about this side affect. I cannot go on like this, l am headed for a breakdown. The pain is intense. I am struggling with holding my fork. Does anyone else have this problem? Cheers, Karen
