Hi, This sounds similar to my experience too.
I’m 64. I had a lumpectomy & sentinal node removal in July 22. highly estrogen positive. Additional clearance for the margins in early Sep22 & everything was clear. 3 weeks Radiotheapy. Started Lettrazole 2.5 mg in September22 Accord brand. Zoledronic acid infusion every 6 months.
I started getting wicked night sweats during my menopause (7-8 times a night) and eventually gave in and started HRT patches (Evorel Conti). Had to go cold turkey when diagonosed. Have been having flushes & sweats ever since, 2-4 times daily & up to 6-7 nightly. I can’t stand it. GP has offered Fluxotine or Clonadine, has anyone had any excperience taking these for fthe sweats? I’m very interested in the new drug Fezolinetant and I’ll stump up to get it proivayely if it will work…to answer the questions
a. Accord, although I did have 2 packs of Amarox & didn’t get on well with them
b. 2.5mg
c. Tiredness (Could be lackof sleep), some joint pain in shoulders, wrists, thumbs & fingers, loose stools (maybe not related)
d. Since Sep22
e. In the morning. My nurse suggested I change from taking it after dinner when the sweats got bad, but I’m not sure it made a difference really
I really need some ideas to get through the night any suggestions (I’ve been warned off anything phyto-estrogenic by my oncologist) I do have sage tea daily
Thanks for any suggestions!
Hi, I have had a lumpectomy and lymph nodes removed 21st December 23
A, my first packet was sun pharmacy, followed by two accord
B, 2.5 mg
C, at first I felt really nauseous for the first month, I’m having problems sleeping, brain fog, dry itching skin and my hair is really thinning
D, I have been taking Letrozole since 8th November 2023
E, I take just before bedtime
I am on Letrozole 2.5 1x dailey. I think manufacturer is Brichardson. I’ve been taking it since last October. Since then, my T score in my left hip has gone into the osteoporosis stage from osteopenia. My oncologist wants to give me an infusion like Prolia, but my general dentist won’t sign off on it so now I’m going to a periodontist next week hoping to get clearance. I have 5 implants and supposedly the infusion medication causes some bone issues in the jaw. My other side effects have been weight gain and hair loss. I was able to contain the weight gain with a diet. My oncologist recommended me to see a dermatologist for the hair loss. He prescribed Minoxidil. Do you see where I’m going with this? I’m now taking further meds to offset the side effects from Letrozole. My oncologist did suggest trying a different med. I’m afraid to because my blood work has been great (no cancer). I’m interested in others thoughts. Thank you
Hi. On letrozole since finishing radiotherapy in feb 21. I have had a lot of brands and was actually crippled with bone pain from head to foot, over a year ago i got Cipla and the difference was night and day. However i cant get it now pharmacy have tried. Ive had accord which is the best of a very bad lot. Still have sore shoulders arms wrists hands feet ankles znd hip and small of my back. Last week i was given zamorax. Oh dear me i went from being fine to a bubbling wreck i couldnt lift my arms my ankles and feet bones were burning and my hands. I at oresent need my hands and shoulders because unfortunately the biophosphonates ibandronic acid i was taking damaged my normally string bones rather than strengthening them against what the letrozole does. I got necrossus if the jaw. And i had such painful legs and hips. Then suddenly out of the blue my femur snapped in two. I had to go for surgery to have it repaired nailed and screwed. They told me next morning my other keg was going the same way totally due to biphosphonates so they had to put a rod in my other femur. I had two broken legs. Its tajen me 8 month to get back to where i am at just now, and rely on my hands to oush me up and my shoulders to haul me about the letrizole is making this so painful.
I didnt take the amorax fir a day. My family actually took them back and got me accord which i am taking now. I was on the verge of stopping altogether, but should God soare me i am on them until 2030.
I had deca scan and no sign of osteoporosis or ostopenia .
Thats the letrozole story.
Taken 2.5 accord at 9resent in morning.
Just to add i took a reaction to doxatxel and picitaxel and its damaged my lungs left me with pulminory fibrosis.
Therefore i will warch what i take now.
No biphosphonates, and only certain letrozole.
Im on meds for life now because of chemo.
I know it does its job . And can cause other health problems.
Hi
A) Accord, since September 23
B) 2.5
C) 6 months
D) Morning around 7am along with other medications
Side effects disturbed sleep patterns but hit and miss, feel like a cripple in the morning coming down stairs but better after movement. Hips soon stiffen after sitting, knees fine, ankles hurt initially but settled although the side of my left foot can be painful at times. Had small amounts of pain in left wrist.
DX scan showed osteoarthritis in my spine. Meeting with oncologist to discuss Bisphosphates after dental appointment. Taking calcium tablets daily.
Mood good and never felt better in myself.
Hope this helps x
Hi lovely Ladies. Hope you are all getting on ok with the Letrozole pills. I have been on these now for 5 months.
A. Have been given Sun Pharma, Accord and Amarox twice. Seems to change every time. Found with Accord I had the most side effects. Aching in shoulders and hips, hot flushes night and day, hair thinning. Amarox has been ok lately. Still get the hot flushes, especially during the day but only last a few minutes. Not sure if pills causing the aching, as I have b12 deficiency which causes aches in joints too.
B. 2.5mg still.
C. 5 months now.
D. Still take at about 9pm every evening. Hot flushes start just after taking them, but subside after about 1/2 hour. Not too bad at night now which is good.
I can’t exercise without becoming so dizzy 1 breath away from passing out with BP of 97/47.
Letrozole Aromatase Inhibitor 2.4 mg By Prescriber - Dr. —, — Oncology — , TN (began 2/20/2024 to ended 4/5/2024)
Hot flushes and sweating
Feeling very tired / exhaustion
Loss of sleep / night sweating / awakening to urinate
4, Losing appetite
Hair loss
Low mood
Muscle weakness, pain or swelling in the joints or tendons in your or legs, shoulders, and chest
Chills / Sweats alternating
Unstable angina, pain, wildly fluctuating blood pressure over 200/100 to below 87/47 each day M, W, F.
Sunday even without exercise BP spiked to 198/102 at 9:38 AM with cardio meds including Clonidine add on went to 88/62 standing BP at 10:42 AM.
As a result, unfortunately too ill to attend Church Service.
Hoping to be able to complete Physical Therapy for a full session of 1 hour next Monday 8, Wednesday 10, Friday 12.
April Monday 1, Wednesday 3, and Friday 5 only got in 45 min. of exercise until BP diastolic dipped below 50 and was too dizzy to continue.
UPDATE:
Was able to complete Physical Therapy Monday.
Took mononitrate after exercise.
Took regular heart medication approximately 2 hours beforehand.
Relieved this is over.
I will not look back.
Looking forward in prayer that cancer remains gone.
I will know the last week in July when I get another 3D mammogram, sonogram, and MRI if the cancer remains gone.
Hoping the neuropathy in legs goes away caused by Letrozole and the lipids start going down.
Upshot:
Slept somewhat better last night.
Should get my dopamine booster pills soon.
Letrozole kills dopamine levels.
Hope mine level does come back.
Without dopamine we head for Parkinson’s and dementia.
Pray for me ladies as I will pray for you also for complete healing.
I am currently taking SUN brand of Letrozole but due to change to ACCORD brand from Sunday. For no other reason than it is the brand sent on my last repeat prescription delivery.
2.5mg tablet once per day.
Yes, I’ve had varying side effects which include painful knee/foot joints, night sweats, more frequent bowel movements, a few occurrences of what seems like uti’s. I’m also not really sleeping through the night, with frequent visits to the loo needed.
I’ve been taking Letrozole since my mastectomy at the end of February and have been advised that I will be taking it for a total of 5 years. In addition I am also taking Ibandronic acid tablets first thing in the morning.
Up to the 2nd of June I had been taking them at about 7pm but since speaking to a breast care contact yesterday, I have bought it forward to 5pm to see if that helps with sleep etc.
Having said all that I do want to stress that my treatment and aftercare has been great and I’ve had lots of useful advice from the professionals looking after me, so I’m thankful for that.
Brand is Sun Pharma
Strength is 2.5mg
Side effects are flushing, carpal tunnel in right hand, vertigo, nausea, headaches
Been on for 5 weeks
Take in evening
[quote=“Silver6, post:1, topic:104834”]
a) Which Brand of Letrozole do you take ie Accord;
Sandoz (I live in France)
b) What strength is Letrozole prescribed? 2.5
c) Side effects Yes or No. yes, to start with, mild nausea, very dry mouth, sore knees, water retention. Hot flushes but these started after stop ping HRT. Maybe slightly worse but can’t be sure. All of these have improved as I am exercising a lot, I did before cancer but now aim to do 5 weight training/HIIT sessions per week and walk most days. It’s helping hugely to manage my mood and control of weight etc. and is making the whole thing bearable.
d) How long have you taken Letrozole 2 months
e) Particular time of day you take your Letrozole
[/quote] evening but considering morning if it might help with night hot flushes.
I have been taking the Accord brand of Letrozole (2.5mg) for nearly 3 weeks. I take it at bedtime and haven’t noticed any side effects to date although I realise it’s still early days in the scheme of things. However I am also taking supplements to mitigate possible side effects.
@welsh_lady1 what supplements are you taking please? I’m taking zinc, magnesium citrate and probiotics - all for my lupus - and now prescribed iron for anaemia. I am currently taking Sun brand of Letrozole.
Hello nannabee
I’m taking Turmeric with black pepper for my joints and Omega 3 for heart & brain health and cholesterol as my cholesterol was already quite high before starting Letrozole.
Good luck to you, hope all goes well for you.
Thank you for the info, forgot I’m also taking omega 3 and been prescribed Calcium and Vit D. So more or less the same. However there have been a couple of threads on turmeric and it’s considered a definite no no with cancer related drugs.
Ive massively improved my diet and practice yoga a couple of times a day so am doing all I can.
Wishing you a continued peaceful and happy time xx
1 Accord
2 2.5mg
3 Indigestion, stomach ache and wind
4 Two and a half months
5 Lunch time with food
I am 81 and am only just experiencing occasional hot flushes but they are very mild
Hi all
a) Accord tried Sun ( felt more achy, Accord was out of stock, pharmacy has it listed as my preferred brand)
b) 2.5mg
c) Yes. Hot flushes, achy joints, stiff fingers, (possible carpal tunnel in left hand), vaginal atrophy, urgency to wee, brain fog, fatigue.
d) 7 months
e) 7:30pm. I tried taking an hour earlier and earlier over a few days as my hot flushes were worse between 7pm and 7am and my sleep was disturbed. I even tried at lunch time and first thing in the morning. It made no difference so back to 7:30pm).
Tried out practically all brands of Letrozole.
Accord seems best for me. Cipla brand seemed the worst for me.
2.5 mg.
Period type pains for the first week or so. (Oncologist very surprised at this) but no bleeding. After that completely ok.
Terrible leg pains to begin with which subsided after about six weeks, however joint pain in legs gradually getting worse. Now after 5 years I still have no trouble walking but in the last six months I have found my knees will not let me climb or descend stairs without real pain and I find it really difficult to get up from an armchair. Knee joints really weak now.
Been on Letrozole for just over 5 years with another 5 years to go.
Have always taken it at night as oncologist suggested. Taken with water.
I am now 73 years old. Started Letrozole when I was 68 after mastectomy and lymph node removal, chemo and radiotheraphy.
Over the past 5 years I have noted the ingredients in the different brands. Accord and Glenmark seem to have ingredients most similar to the original Femera Letrozole.
Hope all this information helps with your survey, please post the results on here eventually.
Sunshine 21
