Superficial thrombophlebitis an memory loss

[Dafduck24]

I have been prescribed letrozole after having a cancerous well contained lump removed plus 3 lymph nodes which were clear. Had a weeks radiotherapy which the oncologist said wasn’t essential. Could walk away at this point.

Have been on letrozole for about 6 weeks and had a few side effects. 3 weeks in my veins swelled on inside of my calf (Superficial thrombophlebitis was diagnosed) never suffered from this or anything like it before. Started to have trouble finding words in conversation. I’m 70 years old, concerned. Stopped taking letrozole 10 days ago brain function improved. Anybody else had similar problems?

[Cu4281]

I absolutely hated letrozole. I quit it and went to Exestrame and now I am back to what I started with Tamoxifen. I feel so much better with less side affects by coming back to Tamoxifen.

My hands and feet were affected so bad with the letrozole, along with joint pain and bone weakness. It was better a tiny bit with the Exestrame but I had been on one or the other for about 2 years and when I went back to Tamoxifen it was like such a relief, I felt so much better than I had for 2 years. I am 5 years into my breast cancer journey with a lumpectomy in my right breast, 2 nodes removed and no chemo just radiation. I just turned 60 yesterday.

I think you have alternatives for medications you can try. I have read some real bad side affects from Letrozole tho. That was my worst one by far.

Good Luck🤝

[Dafduck24 in reply to Cu4281]

thank you I was considering not taking anything. But my sister was on Tamoxifen for the full five years without any side effects. Perhaps I should consider that. Thank you again and good luck.

[hummingbirdmom]

I had to stop taking letrozole after taking it everyday for 3 months. The last week of taking it was unbearable. It made my heart have many palpitations and thought I was going to have a heart attack. It was very extremely frightening! I read this is a 'rare' side effect. Tamoxifen sounds good but it's suppose to cause heart attacks. I'm not taking anything right now and feel so much better. I wonder if there's a place I can read about women who have stopped medicines and doing fine.

[Jack2019 in reply to hummingbirdmom]

My first BC occurred in 2018 and started Arimidex at that time, 18 months later I got a second primary BC, so was told to stop that medication, since it didn't work for me, and was prescribed tamoxifen. After much thought and consultation I decided to not take anything. I was trying to way up the odds of getting a new cancer to potentially having a thrombosis. I choose to go medication free. So I have passed the 5 year mark for 1st., and 3 years for the second. It is a hard decision, I think for me both mine were stage 1 so I think is why I made that choice, it might have been a different one if they were stage 2 or above.

[Dafduck24 in reply to Jack2019]

Thank you for replying.

Yes it’s concerning whether to do as you are told when the oncologist suggests you take these preventive medicines.

But I decided I didn’t want to cause any other problems with my body resulting from taking these medications.

On speaking to my oncologist I was told in his opinion I would be 3% (of a very low figure) (for 5 years and 10% for 10 years) more at risk by not taking anything. But that was only his guess really by looking at the fact lump in breast well contained and had not spread to lymph nodes. So had it removed and radiotherapy for 5 days. So just have to see. It’s my choice at the end of it.

[hummingbirdmom in reply to Jack2019]

You're experience and your decision was very encouraging. I'm 61 yrs old diagnosed this yr. Jan. 2022 with stage 1B, her2-neg BC. Following month-Feb, had left breast lumpectomy and 4 left armpit lymph nodes removed- 3 neg and 1 micro positive. After surgery healing, had radiation on left breast and left armpit. After radiation finished 3 months of letrozole then stopped med because of many frightening heart arrythmias (felt like was going to have heart attack). This Sept., had mammo and was negative, I thank God. In six months will have breast mri. Yes, it's indeed a very hard decision with many tears. But my heart isn't beating erratically anymore like it's going to have a heart attack. Thank you for your encouragement.

[Cu4281 in reply to hummingbirdmom]

I wanted to stop taking medication because I know it will improve how I feel. However, my oncologist said these cancers can be nasty and it is better to be on the meds. I would be very interested to know if you find a site that talks about stopping the meds. I do know there is an expensive test that is not covered by most insurances to see if it is actually worth taking them - if they are helpful or not I guess. That would sure be great to know!

[hummingbirdmom in reply to Cu4281]

I'm not a medical person and wanted so much for medicine to work but when the side effects started to upset the function of my heart, this was frightening. I tolerated the other uncomfortable side effects of letrozole but heart attack side effect were not acceptable. Found this article and like to know what you think, thanks. breastcancer.org/research-n...

[Kazza1111 in reply to hummingbirdmom]

I've just started taking Letrozole and getting sharp pains in my chest, how were your pains?

[hummingbirdmom in reply to Cu4281]

Sorry, looks like I didn't get all the website. Here it is: breastcancer.org/research-n...

[twiceshy2]

this is my second round with BC - the first time I refused any medication afterwards because of the side affects - this time all my doctors said I need to take something - I have been taking Letrozole for 6 weeks now - so far I am good but I am having trouble sometimes finding my words which is new - until I read your post I never thought of Letrozole as the reason why - now I am going to ask my doctor. I am going to read the other replies so I can understand this more. Good luck on your journey and thanks for posting.

[Dafduck24 in reply to twiceshy2]

yes came off letrozole about six weeks ago but still have trouble finding certain words in conversation. Don’t think it was the op because ok after that. Unless delayed effect. Certainly concerned.

[Kazza1111]

I was given it after surgery, took it for a week and stopped after having heart palpitations and swollen veins in my neck. Saw my surgeon two weeks after and she said I'd done the right thing and was going to prescribe tamoxifin, but delayed it until after I have radiotherapy

[ellenslight]

Thank You! I swear my memory or words are a little off! No one seems to have a comment when I mention it.

I was dx w Invasive Lobular Carcinoma last May. Out of the blue, yearly mammogram. It doesn't form as a lump so it was kind of an area in the back of my breast against the chest wall. Partial Mastectomy ( no lump so no lumpectomy!), Radiation and on Letrozole since November.

I do not like it at all. On top of being a little off in memory, I have really bad pain in the joints of knees, ankles, a lttle hips and definitely hands. And sometimes I am just totally wiped out, like all of the sudden. Ughhh. I'm 69. Any doctor or other experiences person tell you what to do? I went off the Letrozole for 10 days on my own and the symptoms were somewhat better, but I was too concerned about no meds and went back on it. Are you going to start again or switch AI? I am switching medical oncologists, just had my records sent to the Moffitt Cancer Center.

[ellenslight]

Sorry! All of the sudden all the other replies popped onto my screen. I got a lot of good info from your replies. Sorry to post without understanding process!

[Kazza1111]

I was in a similar position and tried Letrozole for a week and had very bad heart palpitations and stopped it, my surgeon told me I did the right thing and I am now waiting to try exemestane 🤞