This website uses cookies. By clicking OK, you consent to the use of cookies. Click Here to learn more about how we use cookies.
70424members
334online
370422posts
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
- Home
- :
- About Jo51PPP
Jo51PPP
Member
since
01-05-2012
81
Posts
0
Hugs
14-08-2012
09:51
I was on Tamoxifen for three years and my blood pressure remained consistently low - as it always has been. I have now been on Letrozole for 18 months and have recently found I have high blood pressure for the first time in my life. Over the past two weeks it has been checked several times for the first time since I started taking Letrozole. I am having a fasting blood test next Monday and see my GP again at the beginning of September after my husband has taken several blood pressure checks at home without telling me the result! I am also getting regular headaches across the back of my head which I can only assume are due to the high blood pressure.
Jo
... View more
05-05-2012
05:25
Hazel,
I've been on letrozole now for 18 months and SEs are gradually getting worse - sore, stiff hips, ankles, shoulders, night sweats, headaches, constantly tired and feeling nauseous.
However, when I started with letrozole I was on Femara, this came off licence and I was given Teva brand which was ok. With no explanation (cost presumably) for two months I was given the Arrow brand and I felt absolutely shocking. Much worse SEs and suffered some post-meno bleeding (the follow up to which is another long story! (No reason found!)). After these two prescriptions I started getting the Teva brand again and almost immediately felt a lot better (until the past two to three months).
I would suggest you request to go back to Teva.
Jo
... View more
30-10-2011
08:58
I have my 'urgent' appointment (requested on 15th Sept!) with the gynaecologist tomorrow. Haven't had any more bleeding but have a nice bloated tummy and am peeing about every hour and a half! Am hoping it is something as straightforward as fibroids and nothing worse. Can't help but worry a bit though.
Will let you know the outcome and any information I find about Letrozole.
Jo
... View more
22-09-2011
10:59
I switched from Tamoxifen to letrozole in January this year. I had a bone density scan before the switch to provide a base level for my bone density. I was told the exact opposite by my oncologist in that Tamoxifen actually strengthens your bones whilst aromatase inhibitors (letrozole, arimidex etc.)thin them hence the scans before and during taking them.
Jo
... View more
22-09-2011
10:49
Sharon,
I was on Tamoxifen for 3 years and switched to Letrozole this January after two years of having regular blood tests to show I was post-menopausal (no periods for 4 years). On Sept 13th I started bleeding after a couple of days of the dragging stomach pains and headaches. My GP has sent an urgent referral to a gynaecologist to investigate and also said the blood tests are not accurate as hormone levels can fluctuate widely!
I am interested to know what they said was the cause for your partner. Was it periods starting again? In my case I just found it strange that just as 'Femara' came off licence and I was prescribed a generic version of Letrozole my flushes and night sweats stopped, aching joints disappeared, having not slept for four years I suddenly started sleeping through the night, and this bleeding started. Coincidence or something more sinister with the medication?
I'm sorry I don't have any answers for you but keep me updated and I'll do the same when (if)I get some answers.
Jo
... View more
16-09-2011
10:41
Rang the Breast Care nurse on Wednesday. She said this type of bleeding is not uncommon and could be a hormonal 'reboot' and periods starting again (please no!), fibroids, thickening of the wall of the uterus and various other things. However she said any type of abnormal bleeding should be investigated and told me to contact my GP for a checkover and hormone blood test. He may then decide to refer me to a gynaecologist. I find this strange as all my treatment was in Sth Wales (until I moved back to England last year) and the first thing I was told after diagnosis was 'for the next 5 years you don't go to your GP you come to us'.
Anyhow, I went to see the GP today and he took a history and said he would sent an immediate referral to a gynaecologist and I should get an appointment within two weeks. No blood test required. It is apparently procedure to refer any post menopausal bleeding as urgent in someone with our history. Why couldn't the breast care unit have done this and saved the GPs time?
So now I wait and try not to worry. I'll keep you informed!
Jo
... View more
13-09-2011
09:30
Puddleduck
I have been on letrozole for 8 months after 3 years on Tamoxifen. I have had bleeding this morning for the first time in 4 years. Same as you - menopause induced by chemo in 2007.
Let me know how you go on and I'll do the same.
Jo
... View more
12-09-2011
11:32
I switched to Femara from Tamoxifen in January this year. Hot flushes and night sweats were horrendous, had regular migraine headaches, aching finger joints and stiff ankles etc. Since Letrozole came off licence I was given a different brand last month (can't remember manufacturer. The night sweats and flushes and headaches completely stopped but I just couldn't sleep. (Didn't sleep well before but even worse with these).
This month I've been given yet another make from Arrow. Flushes/sweats and headaches still gone, finger joints and ankles much better but now getting quite strange head pains. I also now want to sleep all the time!!!
The moral to this seems to be that if you can't cope with the side effects ask your doctor to try you on different brands, you may find one that is not too bad.
Jo
... View more
25-08-2011
12:29
Phenergan - wow that brings back some memories! Midwives and health visitors used to recommend it for babies that wouldn't sleep - a spoonful at night and it knocked them out (that was 31 years ago when my son was born). I didn't know you could still get it - thought it had been outlawed (maybe that was just for babies!).
I seem to remember it used to smell of orange liquer - does it still?
Jo
... View more
22-08-2011
03:19
I've just picked up on this thread whilst trawling through everything I can think of at 3.00am!
I haven't had a full nights sleep since the start of treatment in July 2007!! I was on Tamoxifen for three years and used to manage to sleep about three hours at any one time - have been on Femara since January and that is now down to two/two & half hours then wide awake.
I still get terrible night sweats and aches & pains from the Femara. I have tried everything - natural remedies, prescription remedies, alcohol, chillow, climarelle quilt & pillows - nothing works. I have just accepted I am now an insomniac.
I just get up, switch on the tv and doze on the sofa when I can. I pretty much know the scripts of about every programme on Sky during the night!
Jo
... View more
08-07-2011
12:31
Daisyleaf,
Just for info I was a civil servant! There were several of us at work going through the same treatment at the same time and we were just the latest of many.
I think the difference may be that as civil servants (and many other jobs) we don't work there as a vocation just a job. It then makes it much easier to walk away from. Many workers in the medical and teaching fields (again not solely these)are drawn there as a vocation hence finding it harder to go.
Jo
... View more
15-06-2011
11:45
I was dx June 2007 - surgery, 6 months chemo & 15 rads. I went back to work straight after chemo but before rads. Somehow I just couldn't get my head around the work anymore and it seemed so unecessary. I was also knocked out by the rads and very tired. I stuck it 8 months and then decided to take early retirement (age 50). I have never looked back!
I don't have a full pension but then again I don't spend as much. I am never bored and haven't been since day of retirement. Bc changed my outlook on so many things and I love being able to make the most of every one of them.
Hi Ninja - sorry to hear you are in hospital. I hope your treatment is going ok now they know where to look! Haven't been to the Haven for my appointments as I've had shingles in my head and eye (not nice)!
Jo
... View more
15-06-2011
11:34
I'm 4 years on from my diagnosis, nearly 3.5 since finishing chemo & rads and am suffering as badly as ever with flushes. For 3 years on Tamoxifen I got them day and night. Switched to Femara in January this year and the daytime flushes stopped but night sweats are so bad I can't sleep well at all. The day flushes have just recently started again since I have had shingles.
I have tried the chillow - which is great until it warms up with your body heat, the space-age Climarelle duvet, pillows and mattress cover - which don't work at all, cotton garments, and nothing seems to help. I am considering filling a hot water bottle with cold water and ice to see if that works! I think we just have to wait it out!
Jo
... View more
15-06-2011
09:33
I have every sympathy with your wife! I am suffering with shingles at the moment which also started in my right eye. The right side of my face swelled, then the glands in the neck and I get terrible pain in the back of my head (as well as stabbing pains and soreness in the eye).
I was treated by my GP for cellulitis which apparently affects those with lowered immunity, and can be quite serious. However the antibiotics didn't work and after two hospital trips I have been told it is shingles.
I finished my chemo three and a half years ago but still seem to have a lowered immunity - I now catch everything going which I didn't before.
I really hope your wife feels better soon - it's hard enough with just one thing to deal with without both.
Jo
... View more
10-06-2011
04:27
Good news for once! Had mammogram and ultrasound on Wednesday and the lump is a cyst (which is now reducing in size). They found a couple of other cysts that they think are a tiny amount of fat necrosis from my lipomodelling reconstruction but otherwise everything is fine.
Husband also starting to feel a bit better. (I think the worry of my lump wasn't helping him).
Thanks for your support & if I can help anyone else let me know!
Jo
... View more
29-05-2011
12:47
I'm a bit late joining this thread but I also just needed to vent! I was originally dx in June 2007, followed by surgery, ER+ no nodes affected, 8 chemos and 15 rads. 3 years on Tamoxifen and switched to Femara this January. I have been doing great until last week when I found a small, painful lump on my ribs to the centre of my chest on the bc affected side. I saw my GP on Friday who says he thinks it is a cyst but with my history to be on the safe side he has referred me back to the breast clinic for an ultrasound (not the clinic where my original treatment was done as I have moved across the country since then!).
I am now pretty worried it is a recurrence, worry being made worse as my husband had a heart attack 2 weeks ago (aged 55!) and is not particularly well.
Jo
... View more
17-05-2011
04:52
Hi everyone,
Please can I join too? I switched from Tamoxifen to Femara in January this year and I have started with the heartbeat in the right ear. Only get twitching eyes when I'm really tired (which considering I can't sleep due to night sweats is quite often I suppose).
I am almost 4 years on from dx and 3.5yrs after chemo so it's the hormone therapy that's done it for me.
Jo
... View more
25-04-2011
10:10
Hi Ninja,
I'm nearly 4 years on from diagnosis. It's crap going through it all but believe me it goes so quickly and before long you're looking back and thinking I can't really believe I went through all that. The bad news is that side effects from the drugs after treatment are lousy - and that goes on for another 5 years!
Hope to see you on 5th (it will be my first time too).
Jo
... View more
20-04-2011
05:19
I can make 28th and could do 5th May at a push but I've got a friend staying overnight on the 4th and it might be a bit rude to just kick them out in the morning!
Jo
... View more
