Weird sensations in different parts of my body . Recently started Femera
Hi all, hope your all doing well in these difficult Omicron days. BC is difficult at the best of times let alone during a pandemic. I have finished all my treatments and started on Femera last month and i have been getting these weird sensations. Sudden sharp stabbing pains anywhere in my body and insect bite like stinging sensations all over my skin. Am i going crazy or have others experienced similar. i was wondering if it was later effects of radiation which I finished last November or from chemo which ended in September or related to recent aromatase inhibitor. Any advice would be appreciated
What to do to regain my strength and energy levels
I have finished my chemo, radiation and now on hormone tablets for nearly 60days. I just cannot seem to regain my energy levels and was wondering if I should be taking a supplement. I cannot do much before I am puffing and exhausted, I am doing more than when on chemo as that wiped me right out !! I am going to get blood tests to check, and I have not been doing any exercise so I am going to start a little walk every day and try to build it up. Any suggestions would be appreciated.
More research needed into side-effects of chemo and hormone therapy
In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff seem to be unsure about causes and best treatment for side-effects. I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care. In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects. The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types. The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.” Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world.
Prosigna testing
Has anyone had gene testing such as Prosigna and how has it guided you in treatment decisions? How have you judged a low risk of recurrence and would you decline any element of common approaches to treatment (chemo, radiation, endocrine therapy?) as a result. Discussion on this site suggests to me that all of the hormonal treatments (Arimidex?) have horrible side effects that I would love to decline.
Follow up oncology appointment....a colossal waste of time.
Apologies for the monologue in advance. So yesterday was my 18mth post chemo appointment. That's two hours of my life I won't get back. What a flipping waste of time. I have zero raport with this man. Bearing in mind that this is the bloke who told me at the beginning that we are basically wanting hormone therapy to "castrate me"...LOL....Yes those were the words. I could write a book on the dumb shit people have said to me along the way. Prior to now he's told me that things will get better over time. Well I think that 18 months is enough time so I went in with a list. There are various things that I attribute to chemo and rads, the others to Tamoxifen and a couple due to surgery. Sun & heat sensitivity is one of the big ones right now as it affects my income. I have just about had to give up teaching riding as I can only tolerate being in the sun for about an hour or so in summer. I overheat badly and that makes me nauseas and dizzy. Apart from the fact that I love teaching, (my specialty is riding biomechanics and overcoming fear which has proved quite useful throught BC) nobody needs to lose a few hundred dollars a week. No answer for that one it should have resolved by now. I made the mistake of saying I had been able to improve some of the Tamoxifen side effects. "Well that's good" Next subject. No interest in what had improved and what hadn't. I asked whether or not we should be doing hormone testing or something to see where that's at. Apparently that's not useful until about the 3 year mark and gives no evidence of the eficacy of the drugs. By this time I had zoned out and didn't bother asking anything else. The ho hum of changing to letrozole after then just buzzed in my ears. Blah blah blah... I have come to the conclusion that once active treatment is over, you didn't die, and have completed the suggested steps the team (apart from the surgeon for followup scans etc.) has pretty much done their job. "Next please" "See you in six months." Why, what for? So I can sit in the waiting room for an hour or more for a 10 minute appointment. From now I will go in to check the boxes, grab my script and stay in the loop just in case I need it later. They have new patients to worry about which is what they should be doing I guess. To be fair, what can they really do? What's done is done. What am I really expecting from them anyway? There is no magic potion to reverse things just time, perseverance and never giving in to it. I have no more tears for this thing these days so I just get annoyed. Luckily I do annoyed very well. Annoyed keeps me searching for ways to improve things and make the best decisions for myself and the quality of life I find acceptable. No less than 99% I might add. I can take care of the 1% with wine ::wink: Steer your own boat lovelies, you are the best captain for it and nobody knows you like you. Thanks for listening as usual. Hugs to all, xoxoxoxoxoBrain fog, memory and the fun for every one.... word mix
@kitkatb @Harvey1903 @Blossom1961 . I tagged you guys as I was going to put this with the discussion in night howls but thought it might warrant it's own heading and may be help for others. I still have trouble with the melding of two words and loss of train of thought. I also have an issue with spelling which is incredibly upsetting and frustrating and has never been a problem for me. The good news is you can improve it! The short term memory I have been able to rebuild really quite well. To the point of not forgetting why I am at the shops or why I walked into a room and, I haven't had to set an alarm to remember anyones birthday for a while so yay! There are still a few other issues with mid term memory blanks and disorientation but I am working on them.. The problem seems to be (for me anyway) that you can run through what you are going to say in your head and it is correct. By the time it gets out of your mouth its backwards, sideways and upside down or you forgot halfway through right? I haven't found reading any help at all. My brain drifts off, doesn't take things in and I end up reading the same paragraph three times to keep up with what's going on. This is much better now though was unhelpful and frustrating for me in the beginning. Its taken a lot of trying different things for a couple of weeks at a time to see if there is any benefit. These are what I have found works best. They are fast, easy things that you can see improvement fairly quickly and a bit of fun. Otherwise you're not going to do it conistently. Well, I'm not any way. You may need to set reminder alarms at the start to remember to do them until they become a habit. 1. Elevate app. Down load it Just the free one. It takes less than 5 minutes to complete. You only get one session a day on the free one but any longer than that I found a bit ho hum. If you're up for longer and the $5 a month for the extra bits go for it. Do it first up in the morning with your coffee or whatever. It works best then. Wakey wakey brain. 2. Word search on a timer. Without a timer unhelpful, distraction, brain wandering etc. I have a find a word app (I think it is by mindlogic) this one has a timer that gets faster as you go through the levels and a lot of different categories. If you prefer pen and paper, use the stop watch on your phone/ egg timer, whatever. 5 mins in the morning and however often you want to play during the day lunch break etc. 3. Crosswords. These are incredibly helpful to me. Again the time is essential. Do one without it and then just try to beat that time. Easy. A little more time consuming if you chose the big ones, but you can buy a book of the smaller ones pretty cheap at the newsagent. Do whenever but try for one a day at the beginning. That's it!!! It's the timer that gives you the focus and the consistency. I also take the swisse ginko and brahmi focus supplement. Still haven't decided whether this has been helpful and am pretty haphazard about taking it at the moment so probably just another expensive pee product. Hope you get some use out of it. xoxoxoxox
