Docetaxel Side Effects FEC-D Long term side effects or menopause?
Hi all, its been several years since I posted on here. I'm hopeful someone can help. My apologies for my long post. I promise Im not a hypochondriac. I'm coming up to 7 years cancer free and should be living that life changing, "Im so greatful to be alive" kind of life. But I feel like cancer has added 20 years to my health. Anything that ailed me before treatment has amplified. My knees and ankles constantly ache. Its very hard to stand up from a seated position. I have neuropathy symptoms from the knees down. I randomly run out of breath. My hair feels noticeably thinner (it grew back white). My scalp constantly itches (no dandruff, just red) and I keep getting small lumps on my crown and the nape of my neck. I'm also getting re- occurring cysts in my arm pits, some have showed up in my breast during mammograms, but they come then go. Ive had chemo induced menopause for 6 years now. So much brain fog and vertigo. I now have osteoarthritis and to top it off, during my post chemo scans they found a lump in my skull towards the base of my neck which was deemed to intrusive to do a biopsy. At one stage I was told I would need yearly scans. I feel like its been put in the too hard basket. Ive been trying to get doctors to listen to my concerns for 2 years now. Ive also been trying to get a specialist to see me since June last year. I cant even get on their waiting lists. The team that looked after me during my cancer journey were absolutely marvellous. Now that Ive been 'signed off' help and understanding have been lacking. I'm on long waiting lists to have things looked at, living with the fear of re-occurrance is always at the back of my mind. Im going around circles with my GP but Im now too emotionally exhausted to make a change. I lived with anxiety and depression before cancer but now I feel it is overwhelming me. Ive tried counselling several times but I havent found them helpful. Dealing with this and lifes 'normal' challenges has really changed me. I have searched the internet for sites that deal with life after cancer. Trying to find out what side effects are common or potentially long lasting. How to treat them or how to deal with them. Are my symptons a result of treatment or is it a menopause thing? All the sites i find talk about treatment and short term side effects. Im hoping theres a site out there that might inspire me and give me back the drive to look after myself. Even a site for menopause after triple negative breast cancer would be very helpful(preferably an Australian site). Ive been told to avoid any hormonal treatment. Are there other options? If there is anyone living a similar outcome to me, what are you doing to help your self? How are you treating menopause after TNBC? Whats working for you? Thank you if you took the time to read my post, I know its a long one but i really appreciate it.
Alternatives to Zoladex and Tamoxifan? & Genetic Testing for Drug Metabolism
Hi all, Who has had Genetic Testing for Drug Metabolism? I have and it has been spot on with understanding why over the years I have had sooo many side effects with different drugs. At this stage the testing is not covering every medication, but it is improving it's data base the more people do the test. It has been helpful when I have had my lumpectomy, my anesthetist tailor made my drug regime and I had no horrible side effects from the sedation or pain killers. I was also able to see that Tamoxifen is a no go for me. I was interested to see why, so I rang the genetic testing company to see why it came up as Red when I typed it in on my report. They told me that I may or may not have side effects, but I will not metabolise the drug to make the effective ingredient for it to work. I have told my onlocolgist this, and she is insisting I try it. I had severe side effects with Zoladex, the physical, while crappy, I could put up with. But the mental side effects were debilitating; Severe Depression, Anger, Irrationality etc, hence we did not start the aromatse inhibitors. My oncologist used a tool on the web (I think this has be spoken about in another post) and said that if I stopped taking the Zoladex that my 10 year survial rate would decrease by 2.7%. I was willing to take those odds, and we both agreed to stop the Zoladex. But my last visit, she wants me to start the Tamoxifen, because, some women do not have any troubles with it. :/ Again I do not want to, because 1. my genetic test and the company say that studies show that my genetic make up will not metabolize the drug to make the effective ingreadient; and 2. I do not want to add to the horrid mental side effects that I am experiencing ( A little less now that I am not on Zoledex) but still life disruptive. Because of my Genetic make up, I can't take nearly all of the antidpressents used to treat the side effects either. Im about ready to find another oncologist that will listen. What other alternatives to Tamoxifen are there? Other than Zoladex and Aromatase Inhibitors? Is anyone out there not taking anything at all? Thankyou for letting me rant, xo Heres a link to the genetic testing I had done if anyone is interested. https://www.mydna.life/medication/
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 xoxPost Chemo Life
This is my first week clear of the three week chemo cycle. I am officially finished. Next up for me is a bi-lateral mastectomy and reconstruction in three weeks Everyday this week I have felt my anxiety increasing. I can't identify any specific reason. It's really interfering in my day to day life, sucking out the enjoyment of activities that have previously been pleasurable. It's colouring every waking minute. I don't sleep well at all. It's over four months since I had a decent night's sleep. I'm almost looking forward to the 8 - 10 hours on the operating table because I'll be 'asleep' for more than 3 - 4 hours straight. My eyes have been twitching for weeks and weeks. I've just noticed tonight that three more fingernails have started to discolour. My nails and fingertips are so sore, doing basic household chores hurt. I have to wear gloves to do a lot of them. Folding laundry is like rubbing my hands on sandpaper. Some of my fingertips are starting to feel a bit numb. Several of my toes are turning dark brown and are sore as well. The chemo induced menopause is awful. My skin is terribly dry. Over the last few days my knees have started to ache when I move them after I've been still for a while. Is that menopause? Could the anxiety be menopause related? The f*****g hot flushes are making me miserable. Mostly I have them for 12 hours a day, from about 8pm to 8am, but today, all day as well. It's bloody distressing. And I hate the freezing chills that often follow. I am never a comfortable temperature anymore. I used to love going to bed. Now I enter my bedroom and look at my bed like it's a battlefield. And now that chemo is over, I've had to return to 'normal duties' and find my brain is comprehensively unable to process the multi-tentacled beast that is my seven person two dog household. I am making mistakes. This is basically a big whinge, sorry. I suppose I just have to pull up my big girl undies to the armpits and get on with it. I've treated my BC to give me the best chance of a long life, and these side effects are the price I have to pay. My oncologist is sympathetic but disinterested. Do I work with my GP to try to manage these issues? I am seeing a counsellor for the emotion stuff, I hope that starts helping soon. I'm interested to hear how other's immediate post chemo weeks were. Reassurance I suppose!