Hi all
After mastecomy fec, Tax (radio finished end of Nov) , tamoxifen & 6 out 18 heceptin down I ( feeling like most of you tired, extra weight no stamina trying to get back to some sort of fitness level bought myself a cross trainer although I can only manage 5mins at a time. I started to get a sore calf around Easter, and thought I’d pulled a muscle but when I went to doc’s yesterday I was sent straight to hospital with suspected DVT. I have been given self injecting blood thinner & go for a scan next wed.
I had suspected DVT after taking Tamoxifen for 3 weeks. My right ankle went the size of a balloon and from the knee downwards it was also swollen. My BCN told me to make an appt with my GP that day… which I did and she got me a Doppler Scan the next day at the hospital. Luckily it was clear, but I was immediately taken off Tamoxifen and put on Arimidex by my surgeon.
Sadly, DVT is a side effect of Tamoxifen. I too had a DVT and stopped Tamoxifen shortly after. I now have to be extra careful when traveling etc., but no other long term problems. If any of you experience any problems with pain in the leg etc., I would always suggest that you see your GP asap to get any checks and/or treatment started asap.
I had a swollen calf whilst on a course whilst finishing my radiotherapy. I had been on Tamoxifen for 2 months by this stage, I was sent back to my hotel which terrified me…an ultrasound organised for the following day which was negative. I stll have painful calves /legs/muscle pain and very severe cramps( never experienced the intensity before). Apparently my pain in the calf was a “bakers cyst”. We shall see…
It is good to hear about everybody elses experiences. Thank you all
I didn’t have a DVT but I did get blood clots on both lungs, of which they tell me was a result of surgery and chemo.
Because of this I cannot take tamoxifen, so am now on zoladex injections for 2 years possible more.
I have just completed 4xFec and 4xTax and am due to start Tamoxifen next week. When I saw my onc at my last chemo session I asked about possible side effects of Tamoxifen and he was very dismissive. Since then I have browsed the relevant threads and it seems to me there are tons of side effects and some of them severe. Am getting worried!
Like Angie I didn’t have a DVT but had a clot (pulmonary embolism) in my lung. No warning just a pain in the chest and breathlessness. The doctors said it was a) because I had cancer and b) because of the chemotherapy. I was on self-administered heparin injections until the chemo had finished and then on warfarin for another 18 months. Because of the clot I couldn’t go on tamoxifen but am taking arimidex which has a smaller chance of causing a clot. Like Birgit I have to be extra careful when travelling and it is an added complication when trying to get travel insurance as when you have had one clot you are more likely to get another (I had to have another operation last October and was told I was “high risk” for a pulmonary embolism which scared me no end - I was up and out of bed walking around the ward like mad as soon as I could in order to prevent this!).
Heather - I do hope that your scan shows everything is OK but, if not, at least you are getting it sorted.
Hi,
I was diagnosed with DVT in my arm yesterday.My arm became very sore and swollen so went to see oncology outpatients yesterday(that is,after talking to 8 different people on phone about who I should talk to about it)! I have been put on daily, self administered, Heparin injections for about 6 months.
Alli.
I am starting chemo this thursday, have been self injecting tinzaparin for a week now, have to continue daily until chemo is finished ( im at higher risk of blood clots because my blood is vey thick). I am told the risk is very small while on tamoxifen so not to worry about tinzaparin… now very worried reading coments. does anyone else have this problem?
jo
Hi,
I had a massive pulmonary embolism (after 3 weeks in plaster due to a broken ankle following a car accident) on the evening of my breast biopsy and nearly didn’t make it! I was hospitalised for 5 days and two days later was told I had breast cancer but couldn’t have surgery for at least 2-3 months because of the embolism. My brilliant surgeon suggested tamoxifen in the meantime and after several meetings between himself, my oncologist and the doctor in charge of my PE treatment, it was decided to keep me on tamoxifen but I was to take warfarin for as long as I was on the tamoxifen (i.e. 5 years) because of the risk of further clots and have my INR levels checked regularly to make sure my warfarin dosage was correct. After a while I ended up with a self testing kit which avoided long queues at the anti coagulant clinic every month or so and am just coming to the end of my treatment. Luckily I have had no further problems with the Tamoxifen - in fact my surgery 2½ months after diagnosis was considerably less invasive than if I had it on initial diagnosis - my tumour had shrunk a great deal and the morning of my op I had to go for a scan 1st to try and find it for my surgeon!! He suggested that the Tamoxifen had helped in this so I was really pleased - only one small incision for lump and lymph nodes removal. At no time was it suggested that I couldn’t take tamoxifen so maybe different areas of the country have different ideas.(I’m in Manchester area) I have also flown to USA to visit my son during last couple of years and had no probs apart from increase in insurance premiums (unfair as my GP said I should be one of the safest people on the plane as I was taking warfarin, so I should have got a reduction - ha ha)
Anyway hope this helps put your mind at rest a bit- all our experiences are different but it helps to know that others have similar probs but can overcome them in some way or other.
Denise
Im so I glad to have read your comments, as I have just posted this very question,Tamoxifen and warfarin combination.
My Haematologist was quite happy for me to continue taking Tamoxifen as long as I was on warfarin but as my new oncologist dose not like the combination I feel my haemotologist will change mind.
where in Manchester were you treated? would it be at all possible to let me know as I would like to contact their pharmacy medicine information centre for more details.
My mum had this after her hysterectomy and had heparin in the tummy and then ended up on warfarin. Thank god you went and got it checked out. I hope you feel better soon.
Hi all. Your comments make me realise that the blood clot thing is quite common. I also developed them in my lungs during chemo. but it took 10 days in hospital with temperature and cough (at first supposed to be hayfever then chest infection) before they diagnosed them. As I was on an oncology ward I would have thought they were aware of this possibility especially as they were giving everyone preventative Clexane jabs every day. I am now on Arimidex which was prescribed before the clots and Warfarin for 6 months. As I am going on a long (for Britain) car journey on Sunday I shall get out the compression socks we were given before surgery and which happened to get into my bag when I went home. Best wishes to all.
Jenny