Losing Weight on Tamoxifen
Hi Girls, its been awhile. I was diagnosed in 2013, had chemo and four operations and was left with not much confidence in my body which I'd treated pretty well, I thought, only to be betrayed by my boobs. Three years later, I look in the mirror and don't like what I see! So I'm performing an experiment to see if its true that you can't lose weight on Tamoxifen and I'm writing a blog. Girl vs Tamoxifen You can see the horrible "before" photos on me in the first post. I've given myself until christmas to see if I can make a significant difference. It would be nice if some people would look at the blog from time to time and cheer me on. :smile: Or it might be of interest to some people to see if it can actually be done. thanks chibipink
Early Days on Letrozole
So, I started taking Letrozole on the 1/6/18. My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time. Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray! Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat! I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps. I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on! Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know. My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well! My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xoxAfter a break, Letrozole, continued...
Drug holiday over, today I started taking Letrozole again. At night this time. Don't know that it will make any difference but worth a try. If/when (she said optimistically) the side effects return, I'll start my curcumin trial. It's been really really good to be pain (and dandruff) free for a few weeks. I feel it's given me a boost, and more strength to continue. If the side effects don't settle down my oncologist was quite keen to put me onto Tamoxifen. From what I've read here I'm not so sure. Better the devil you know...?TC Chemotherapy
Had Round 3 of TC chemo on Monday morning. Bone aches arrived like clockwork on Thursday night, but now on Friday, I seem to have lower back pain and hip pain for the first time as well. Is this normal? I have been walking 1.5 - 2 kms each day this week. I am finding the variety, and variance, of side effects, to be weird. For example, Round 1, a little nausea, Round 2, a lot, Round 3, none so far.
What to expect when coming off tamoxifen - your experience?
In a few months time I come off the hormone blocking drug, tamoxifen, which I'll have been on for ten years. What withdrawal symptoms can I expect to feel and how long may they last before returning to 'normal'? I ask because a few years ago, I forgot my drugs while on holiday, and didn't have it for a couple of weeks and instead of hot flushes reducing (which is what I expected), they seemed to get worse and I felt yuk and a bit 'all at sea'. I'm 58 now - not sure if that's relevant . What's been your experience?
Radiation after lumpectomy
wondering what's the normal time after lumpectomy does radiation start? I had the small cancer and one node with cancer removed on 1st April. ( one node had changing cells - pre cancer). Oncologist radiologist has set start date at 26 May, but I've been reading they usually start radiation 3-4 weeks after surgery. I should have asked WHY 8 weeks as my scar is great but wondered what other BC people THINK.
Kisquali
FYI - I did post in private group last night but no response so thought I'd try here as well. :-) Hi there all, Strange question for you all for a Sunday night - I'm on my 13th round of Kisqali, still on 3 tablets which is highest dose. I'm taking in combination with Letrozole and the bone strengthening injection every 2-3 months. I'm doing really well on this treatment combo and apart from ridiculously disgusting dry feet that are revolting and foot pain, nausea and tiredness, I can't complain too much!! Recent PET scan has shown that my bone mets are still present but not active according to oncologist which is amazing news apparently. My question is, I think my hair is thinning out and I have a "sore head". Only way to describe it is it feels as though my hair has been up in a "tight ponytail" and scalp is sensitive. Of course, I will check with oncology nurse tomorrow but thought others might have similar experience that they could share. Can't ask anyone at home to check for bald patches as single mum here and don't want to freak my kids out totally - I think that was the hardest part of my original cancer journey for them when I shaved my head as it was all falling out from chemo. Other question for musing this late on a sunday night is, are there others in this group on Kisqali or Ribociclib combo that have been told they are doing really well - I can't seem to shake the feeling that the PET scan got it wrong!! Thanks in advance
Anyone else on Herceptin & Perjeta indefinately???
Hi Ladies Hope everyone is doing well, it has been ages since I last visited. I was wondering if there are many out there who are undergoing herceptin and perjeta treatment every 3 weeks with no end date like myself. I have now been doing it since about April 2016 and while my side effects are fairly minimal; I have started thinking about what I might expect if things continue the same. I imagine the build up in my system will increase the side effects, so far my heart function is fine....but wonder if it will stay that way. Most people I have talked with only stay on this treatment for the 12months, but as mine travelled into my spine the oncologist says this treatment will remain as it appears I am "responding to treatment". Thanks, Kari
Tamoxifen, Bone aches, brain fog and poor memory. Any one else experiencing these?
Hi all, I tried to put this in the tests and treaments category but for some reason it won't let me. So I'm on week nine of taking Tamoxifen and having some serious concerns. Apart from the ever popular hot flushes, my back and hips are aching constantly. Not too bad through the day when I'm moving around a lot, but quite painful at night in bed or sitting. This one is the more worriesome to me at the moment. Very poor short term memory I have to write notes and set alarms for everything at the moment. I am struggling at work when it gets busy. Poor concentration. I am going from the middle of one task to another instead of finishing the first. If it's super busy i.e paperwork, phone ringing, people asking questions, making appointments all happening at once it's like my brain shuts down into this cloud of fog and I have to walk away for 10 minutes so I can think again. I have trouble remembering words during conversation. Occasional light headed, dizziness. Just generally feeling like a bit of a space cadet at the moment. :) So much so, that I asked my GP to schedule a brain scan! So I decided to stop taking the Tamoxifen for a few days and guess what? Within 48 hours I was clear headed. This isn't constant some days my brain works fine LOL, Just wondering if anyone else is experiencing any thing like this.
Trodelvy - any info to share?
Hi, I am reaching out to see if anyone else has commenced Trodelvy chemotherapy and if yes, what are your side effects experiences. I am only in 1st cycle, 2 weeks on/1 week off. Main reaction has been some insomnia and bad fatigue. Wondering about hair loss and at what stage, if anyone has experienced this? Does fatigue get worse? Any other lurking side effects to be aware of?