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koshlake57
Member
since
28-04-2015
27
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2
Hugs
28-07-2017
08:28
Diane You are through the worst bit, shock at hearing that you have cancer, the waiting around while a treatment plan is decided, etc. Now I hope it all looks up for you. Getting a good bra is trial and error for us all. Cotton ones with no underwire were the ones that I used at the beginning and I got some from M&S. Take care and good luck.
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30-04-2017
05:15
Brenda I started Alendronic acid last Sept and have had NO side effects. The side effects from the Letrozole are horrible, but at least no new ones from the AA.
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21-01-2017
12:51
1 Hug
I feel as you do Borbie. I have been on Letrozole for 21 months post lumpectomy and radiotherapy. This drug is awful for me. The pain in my joints is terrible and I feel 80 instead of almost 60. Not only general joint pain but all these "joint issues". In the first year I had 6 issues: tennis elbow, inflamed bicepts tendon, severe pain in wrist, etc. Then I got frozen shoulder in the surgery side. Now I need knee surgery for meniscus repair and my shoulder on the surgery side is again suffering from inflamed biceps tendon. Also the MRI showed a stress fracture and osteoporosis in my good knee. All these injuries/issues cannot be coincidental. The physio thinks the drug is making me more receptive to repetitive strain injury and has made me more susceptible to fractures. I would like to stop this drug but need more information on the marginal benefits of continuing it for 3 more years (to make up my 5 years). If anyone knows any good research sources please let me know. I will certainly discuss this again with the oncologist next April at my next appointment.
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01-08-2016
06:58
Dear emz680 You are having a rough go with this. Your armpit may be stiff and still sore and the physio should be able to help you with this. I can't believe that this discomfort has anything to do with the cancer returning. I am 14 months post lumpectomy and I am still a little stiff in my armpit and surrounding muscles. Good luck. We are all with you.
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03-06-2016
04:22
Dear HappyBoobs2 Sorry I haven't been on the forum recently. The minoxidil is a 2% strength - "Regaine" does one for women and I don't have any side effects from it - nice to have something without side effects! The biotin I take is 5000 mcg and I take one tablet every morning. I don't notice anything with my skin or nails, but my hair has improved and doesn't look so thin and even my husband has noticed. But I think I shall have to use the minoxidil as long as I take the letrozole. I feel satisfied that at least I have been able to sort out just one bad side effect of these drugs. Good luck
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18-05-2016
08:18
Marilyn This must be rather distressing when you thought you had got over it all. My friend in Canada had her unaffected breast reduced in order to "match" the affected breast better. This was all covered on the provincial state health care. Not an ideal solution but a possibility?? Good luck with it.
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29-04-2016
08:46
Dear DRM I too have had 4 instances of tendonitis and I think another problem starting with my hip. This is all since October and I have been on letrozole 11 months now. The young oncologist last week said to me "How can you be sure it is the drug?" But at least he referred me to a rheumatologist. A physio I saw in Florida for these injuries/issues said that he thinks people taking many cancer drugs including Letrozole seem to be more susceptible to reptitive strain type injuries. It is very very frustrating. A year ago I felt 40 (age 59) and now I feel 80. I have also been referred to the Homeopathic Hospital at Queen's Square (London) to see if they have any suggestions for the joint pain and menopausal symptoms. I have found that heat - bath, hot water bottle, hot tub on holiday all help the general joint pain, but I think it will be continual physiotherapy and exercises that repair the "injured" tendons. You are not alone! Just keep trying things and sharing information.
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29-04-2016
08:35
I am 12 months on Letrozole, 11 months post WLE and radiotherapy. I noticed my hair thinning about Christmas and was devastated after all the joint pain and joint issues. 3 months ago I started minoxydil and last month biotin and hope that shows some results soon. At least my hair is not getting any worse so far. The last two were recommended by my hairdresser. All we can do is gather information to help sort out these side effects. Best of luck.
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07-04-2016
09:08
I have a friend who, when she finished her 5 years on Letrozole with minimal SEs she was prescribed it again and has now been on it for 10 years for the same reason as your doctor gave you.
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07-04-2016
09:04
My skin also seems "thinner" and more wrinkles forming, but I had to stop my HRT and start Letrozole at the same time 6 months ago so maybe this is just one of the symptoms. I am 59. I am slapping on lots of Ulay as well.
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07-04-2016
08:59
Dear Kayak Jan Give the Letrozole a try. I have a friend who has been on it for 10 years with hardly any SEs. I have been on it now 6 months and have joint pain. The odd thing is that the more I exercise the less the joints hurt. I play golf 4 times per week and go to the gym or swim on the other days. The other thing I found in a hot tub while on a ski holiday this winter is that the heat of the hot tub is great. I also take calcium and vit D as my bone density scan showed a small amount of ostopenia. It is rather depressing that the cure causes so much pain but it will likely keep us cancer free.
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30-01-2016
08:17
Did changing your drug help with the joint pain or hair loss. I have been on Letrozole for 9 months and am the same as you. I never expected this as I thought once I recovered from surgery and radiotherapy life would be "normal". I have heard the cognitive behavioural therapy is good for insomnia. It is also hard to sleep sometimes with the joint pains and night sweats so you are not alone.
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30-01-2016
08:13
To you all I did not need any chemo - thank goodness, but have now been on Letrozole for 9 months. Besides the joint pain, I have now noticed that my hair seems to be thinner at the front and top - I don't need this! My hair dresser says there is a Kerastase Product called minoxidil for women and I am going to start using this. It seems anything is worth a try.
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30-01-2016
08:09
1 Hug
Lilymole I have been on Letrozole 9 months now and the joint pains are awful. Since October I have also had 4 tendonitis problems: tennis elbow, inflamed biceps tendon, left wrist and thumb so I have been in the physio's office every week it seems. He thinks the drug makes me more susceptible to repetitive strain in the tendons hence the problems. He has used massage, ultrasound and I also ice the areas. I found that the hot tub while skiing helped my general joint pain so have continued with hot baths. Also I find that if I keep exercising it seems to hurt less. I don't know if that helps at all but you are not alone.
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13-01-2016
12:56
Karen You are not the only one. I started Letrozole the first of May and at first the joint pain was minimal in the knees and hips. This has worsened over the autumn, despite participating in golf, gym, swimming, walking, etc. I don't have time to fit in any more exercise. Now I am getting "repetitive strain" problems in various joints and since October have been suffering from tennis elbow, inflamed biceps tendon and now inflammation and tenderness in the left outside wrist and thumb. I am at the physio's weekly with my "injured parts". I continue on with the exercise but need ibuprofen at this stage. I read about taking a high weekly does of Vit D2 of 50,000-unitsfor the joint pain. Is anyone doing this? Are the doctors interested? KoshLake57
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06-10-2015
03:06
I was in your exact situation a few months ago. A month after I was diagnosed Ihad my appt and was given a date for my lumpectomy for 5 weeks after that. They started me on the Letrozole right away though. But you know what - I felt better then because we had a plan. Prior to that I didn't know what was in store. So I had 5 weeks to play golf, go to the gym and try to live normally, knowing that the Letrozole would stop any tumor growth. I had my surgery, followed by radiotherapy 6 weeks later. I was lucky ant the radiotherapy hardly affected me at all- only a little red and itchy so it is not always as bad as the brochures make out. I'm all done now and don't have to go back for 6 months. Try not to worry too much. Once you are given a date, things will start rolling and that is easier than the waiting. My thoughts are with you. KoshLake
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24-09-2015
03:19
Dear confused. My M&S post surgery bras had quite a bit of padding and mostly cotton and comfortable. And I did't look flatter in them than in my underwire ones. Wear what is comfortable for you.
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12-08-2015
01:40
You are ahead of me as I only just finished my radiotherapy 5 days ago. I am only slightly pink but suppose this could still get worse. Even last week the Breast Cancer nurse was after me because I had an underwire bra on and she said that could irritate it, although I haven't found the underwire one uncomfortable at all. I would think that as soon as your skin is not red or sore you could wear whatever is comfortable for you. You are just about there! Good luck.
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28-07-2015
12:37
For post lumpectomy bras, I went to M&S and bought a pack of 2, only a 34B, but they are soft cotton and comfy on both the breast and underarm and have pretty colours. They have pockets for a prothesis if needed. I am still wearing them after 8 weeks. The sports bras squished me too much and felt as if pressing on me. Everyone is different post surgery. I expected the worst and was pleasantly surprised after a lumpectomy and one node removed. I had no problems moving my arm or shoulder. I was back in the gym on day 4 - doing much less - and not using that side so I kept up my fitness. When my 6 weeks was up I started all activity again - golf, cross trainer, rowing machine, etc. Now I'm in radiotherapy week 2. I feel so lucky. You will be fine and it will all work out, it's the waiting and not knowing that is the worst. I think we just get on and deal with whatever we have to as best we can.
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