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, xoxoxoxoxo
Letrozole and Prednisolone
I posted on another discussion thread the other day that my oncologist was very unhappy with the joint pain that has gradually crept in over the 8 months or so that I've been on Letrozole. As well as okaying painkillers, he gave me a first option of prednisolone over 7 days to see how it would work. I took my first one this morning, hoping that it would make a perceptible difference and that I might see some improvement by the weekend. I got up from my desk at midday and walked across the office - shocked that I thought about the process after I had already taken a few steps. Tonight, during dinner, I got up from the table to let the cat out. To make it clearer, I just stood up in one motion and started walking. Last night, to get up from the table took me swinging around sideways in the chair, painfully levering myself up using the table and bench for support, getting my balance, then slowly straightening my body over the course of a number of hobbling steps. I turned around to go back to the table and saw one of the kids with her mouth open - "Mum! You just got up to let the cat out - did you realise that!" I feel overwhelmed...I don't know what I feel... I knew it was bad but I don't think I realised how restrictive it has become. I'm scared in case it's some anomaly. I'm scared to hope that it will keep improving and that the improvement will continue after the course is finished. I'm not sure I can go back to feeling the way I was. I'm not saying that I'm pain-free. My legs are really aching after a day at work and my joints are still sore but they're sore in a way that I can feel it, not stiffening up and sore in a way that I can't actually do anything.Anyone ever get sick of being their own science experiment?????
I really get the shits with overthinking every so often. Things that "before" you would never have thought twice about doing, eating or cleaning your house with now make you second guess a lot of things. Obviously I am not the only one considering the amount of conversations that go on here regarding the do's, don'ts and what can we change that might help to stop it coming back. Looking for answers on what we did to bring it on. Self blame and guilt is still rampant no matter how much it shouldn't be. BC is not your fault. That fucker broke in you didn't invite it in by living a normal life like millions of other people do. I don't think anything I did brought it on, nor do I seriously think that anything I eat, drink or do will have much of a bearing on whether or not it reappears. I am a believer of dodgy genes, mutant cells,bad luck and not everything was nuked if it comes back. Will the tablets work? Maybe they will, maybe they wont. "May the odds be forever in your favour" Mostly I ignore the over analysing thoughts, but every so often they creep in uninvited. I conduct clinical trials on myself to see if things help with side effects. Should I be doing that, I really have no knowledge of what interferes with what apart from what I can google which can have 10 different answers to the same question. I had a cold...do I take vitamin C or not? Should I take any kind of vitamins or supplements. How the heck would I know. My levels are good so what is the point. Don't eat this, don't drink this, don't rub that on. Will that interfere with the drugs? OMG I drank a bottle of wine, that shits definitely coming back now. Eat soy, don't eat soy, not that I really care about soy, quite frankly I think it tastes like crap but you know. Sweet potato is good for you, sweet potato is high in oestrogen, best not. Nuts are good for you, nope not today. Kale (gross) celery alfalfa, tofu, olives, olive oil, red wine. Great for your heart, nope, high in oestrogen. Eat meat, don't eat meat, don't dare grill it if you do. Flax seed and tumeric is awesome, uh oh, no not for you it isn't, too many phytoestrogens. Oh but hang on, in normal people they might help prevent cancer. Freaking strawberries and peaches are on the no no list. The list is endless, confusing and mostly without any kind of definitive answers. Might, maybe, could do, possibly, we don't know. Pick any subject or food and you will find people raving about how fantastic it is and on another page how it gave you cancer. Don't you drink that chamomile tea and don't you even think about smelling that fucking lavender :) Blah. Ok I'm done. Hugs to all. xoxoxoDecided to have a holiday from Tamoxifen over Christmas
Hi all, Tamoxifen and I are really not getting along very well after four months. It hates me and I hate it right back. Hot hot hot, bone aches, brain fog etc some days I can't even hold a proper conversation. Anyhoo, I decided to take two weeks holiday from it over xmas and new year (with my dr's somewhat reluctant blessing). I think she's trying to prove that Tamoxifen doesn't mess with your brain. Well guess what?????????? Day four of being off it and feeling fantastic. Woohoo. Even though it's a short break I am going to totally enjoy it!!!
I'm on holiday... from Letrozole!
With my oncologist's blessing, as of today, I am stopping Letrozole for a month. A Christmas present to myself. The two main side effects are the permanent bone ache in my ankles and thumb joints. I am very interested to see how quickly they go, if they go at all. I'm also curious to observe the effect on my brain, again, if any. Mucosal dryness is the other annoying side effect. When I start taking it again on 1/1/19 I'll try taking it at night. And after observing what happens for a month, I'll add curcumin to the mix. The clinical trial continues!
Trigger Finger/Thumb exercises
I've found a Youtube presentation that explains how Trigger Finger/Thumb occurs & some rubbing & exercises that may help it. https://www.youtube.com/watch?v=V0FfMzemLnU The info from the 2min 20sec mark is more about locating the nodule at the base of the thumb/finger that is restricting the tendon from working smoothly - and how deep tissue massage may help to help break down the scar tissue. This is very similar to what my husband has done in the past when he gets a running injury - he will give deep massage to the muscle, to 'free it up'. I found that I have quite a BIG nodule at the base of my left thumb - it is much smaller on my right thumb. I started the rubbing of the nodule quite aggressively yesterday & I am surprised to say that it already feels 'freer' today! I still can't bend the thumb tho the pain is less (the magic oil may also be helping here too!) - so I am stretching it & forcing it to bend as well, to try & free it up more. Good luck - it is definitely worth a try!Oncologist number 3. A winner finally.
So after sacking oncologist one and two for having the people skills of a cranky nesting magpie, number three looks like a winner. This is the first time I have left an oncologists office without being upset, frustrated or just seriously pissed off. Finally, someone who was willing to listen, was empathetic, yet straight down the line. I now have an all girl team. Which would be awesome if they would all stop having babies along the way:) She actually congratulated me on making it this far on HT. The drop out rate is pretty high within the first year or so apparently. Best of all, she is cool for me to continue the regular breaks on it. Yay for onco number 3 and a big tick for my 2 yr post chemo check up. Hugs to everybody xoxoxoxo
Letrozole for 10 years? Some research results (also relevant for Survivorship)
Hullo all. I'm sorry if this is a bit technical but I find any actual research-based information is worth trying to understand these days, even though a lot of it makes my eyes glaze over but of late I am persisting - here's why. After mastectomy and radiation for a very large mixed invasive and in-situ DCIS with multiple affected nodes (9/20) I was put on Letrozole. I did not have chemo due to several other health issues and age (72 at the time). The oncologist wanted me to take the chemo in spite of the risks (especially my Long QT syndrome, a heart dis-rhythmia which AC-T is not good for) and when I stuck to my guns he said it would be imperative that I do not go off the Letrozole as I would be relying on it almost completely to control recurrence. I chose Femara because of the common finding in the UK that there are fewer side effects on it, no evidence one way or the other on this but it seems sensible enough even though it is more expensive. So it is now almost twelve months I have been on it and slowly but surely I have been noticing side effects creeping up and getting worse. Let me say at once that I have found it very tolerable up to now. Some mornings the body aches so it is hard to get out of bed, the hands are stiff, shoulders and neck often bad especially at night, interrupted sleep, all that. But now my hands are cramping up, legs cramp at night, aching shoulders worse, and mood swings and a state of generalised crossness/anger is making me wonder who I am. I know compared to so many others I have been lucky. But at my age, you have to think about what you are going to do with "the rest of your life". So I have been in the research zone lately looking for the scientific basis and validated studies on which so many of our medical treatments and recommendations are based. Because I can feel my general state of well-being getting steadily worse I have, like many of us on this forum, been wondering whether the quality of life on the AI drugs is worth the reduced risk. I know a lot of women are going off their AIs altogether, or looking at trying Tamoxifen instead. So when I came across this research study, I thought I should let everyone know about it. The short results of this study are very encouraging for those on Letrozole for the extension after five years. But It is also quite encouraging for those who stop the AI after the first five years. The study (published 2016) included 1,918 women diagnosed with early-stage, hormone-receptor-positive breast cancer. The women were aged 60-72 years. All the women had been treated with surgery and 5 years of Femara or another aromatase inhibitor and none of the women had had a recurrence. Presumably any who had had a recurrence were not included in the study but this very important issue is not addressed. It is also not clear whether or not they had been treated with chemotherapy of one sort or another. I am trying to contact the study authors to see if I can find out more. This same group of women were then divided into two, one group continuing to take letrozole (Femara) and the other given an identical placebo. After a median follow-up of 6.3 years, there were 165 events involving disease recurrence or the occurrence of contralateral breast cancer (67 with letrozole and 98 with placebo) and 200 deaths (100 in each group). The 5-year disease-free survival rate was 95% (95% confidence interval [CI], 93 to 96) with letrozole and 91% (95% CI; 89 to 93) with placebo. Presumably the 200 deaths had not been related to their BC. While it is horrible to see that those 165 had developed further cancer, it is still statistically-speaking not a great many. It does suggest that Femara (or other AI) is very effective over the ten years frame for those who have got to five years without recurrence. But even for those who were not taking it, 91% still had no recurrence. I found this very reassuring. Even if you decide you've had enough after five years, there's still a very good chance that you will be fine for another five. Of course there's no knowing whether or not you will be in the group who DO develop recurrences: we need a study of that group to see if there is anything specific to them. For instance, does the number of affected lymph nodes play a clear part in predicting who will or won't be in the 10%? Does the use of chemo of one sort or another make a significant difference? What we really need is much better statistics on what happens to those who go off Letrozole before the first five yeas is up. And one statistic I really want to find: how many who have surgery, radiation and Letrozole (or Tamoxifen) do in fact get to the five years with no recurrence? If anyone has come across research reports specifically on that point, could you put the references up? Reference: The research was published online on June 5, 2016 by the New England Journal of Medicine and presented at the 2016 American Society of Clinical Oncology Annual Meeting on June 6, 2016: Read “Extending Aromatase-Inhibitor Adjuvant Therapy to 10 Years,” in the New England Journal of Medicine Read the abstract of “Patient-reported outcomes from MA.17R: A randomized trial of extending adjuvant letrozole for 5 years after completing an initial 5 years of aromatase inhibitor therapy alone or preceded by tamoxifen in postmenopausal women with early-stage breast cancer.” presented at the ASCO Annual Meeting I don't know if this will make any real difference to my thinking about staying on Letrozole. Obviously the continuing effects on mood, bones, cholesterol etc. need to be taken into account. But it's heartening to think even if one goes off it after five years there is still a good chance you'll see another five. Cheers to all, hope you have a great Saturday in your various places and time-zones, Annski.
