Stop the bus I want to get off.
MicheleR
Member Posts: 350 ✭
This is probably going to sound like a whinge.
I've been on exemestane for 4 years and I'm sick of having no energy, intermittent insomnia and dulled emotions, hot flushes, inability to lose any significant amount of weight despite doing all the right things.
There doesnt seem to be any support in the medical profession other than giving you drugs. GP doesnt want to talk about it as it is the specialists job, only see specialist once a year.
How are you supposed to cope with this long term?
I've been on exemestane for 4 years and I'm sick of having no energy, intermittent insomnia and dulled emotions, hot flushes, inability to lose any significant amount of weight despite doing all the right things.
There doesnt seem to be any support in the medical profession other than giving you drugs. GP doesnt want to talk about it as it is the specialists job, only see specialist once a year.
How are you supposed to cope with this long term?
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Comments
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Treatment is very hard sometimes and for some all the time. I think the drs aren't there to listen to how hard it is but they do know it's hard. They can't take on that supportive role. I expect empathy but not emotional support from them.
Can you imagine how hard it would be if drs had to take on providing support other than the drugs etc. With the number of patients they see they would be so depleted emotionally they would be unable to do their doctoring.
My view of health practitioners is this....firstly I am the project manager of my health and I engage who I need to manage myself. I use the GP as my prime source of care and to access specialist such as my oncologist (I live on permanent treatment) and dermatologist, psychologists, physiotherapy etc.
However my gp can't solve everything so I also turn to other strategies to cope with fatigue such as exercise like walking and yoga. I get acupuncture too every now and then for immune and stress support. I practice meditation and mindfulness to help. In terms of weight management, I went keto and it was amazing and I feel better because of it.
I think there is much we can do to help ourselves too bur for sure I totally get that at times it is super hard.5 -
@MicheleR. You have to vent, and most of us do this on this network. From day one of my diagnosis, I realized that no one wants to listen to what we are going through—not doctors, family, or friends. It does not mean that they do not care. Doctors, including specialists, are focused on our physical health, which they address with medication. I fully agree with Cath62. I, too, am a project manager of my health and well-being from the beginning of this journey and probably for the rest of my life. Unfortunately, drugs seem to be the only option, but fortunately, they are available. We need to take care of our health through exercise, healthy eating, and other complementary programs. It is not easy. I always have to compose myself to keep going. Most of us have the moments to "get off the bus". Take care4
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https://www.bcna.org.au/resource-hub/articles/fatigue/
Hopefully the link above will help you through! It's a so and so! I've just passed the 9 year mark and suffer all you mention on and off! Bone pain in the legs is the most debilitating.....yes I am whinging now!
Take care4 -
Thanks @iserbrown. Ill have a read and thanks to @GorgyS and @Cath62 also.
I exercise a lot. Ive altered my diet. I have a personal trainer/coach. Yes, i manage my medical people. When I try to talk about drugs and their impact my gp changes the topic and my oncologist gets defensive, my surgeon is emphathetic but he reports to the onc. Note that I see my gp monthly for zolodex.
I have strarted to get stress incontinence due to low estrogen. Why cant i talk to my gp about that? I get that its hard for them when they want to give solutions but there may be none.
Ive been trying without success for 4 years to reduce my weight. I have gained some muscle, i have lost like a few cm from my waist but its incredibly hard work for a tiny impact. Im only 52 and i dont want my weight to create future health issues.
But maybe worst of all is the lack of energeticness when i get out of bed and the inability to have emotions which arent dampened. My nether regions are like the sahara this morning!
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Hi @MicheleR, I'm just starting my hormone therapy and weigh gain and fatigue is something I'm concerned about. I struggled losing weight before all this started (I'm 51), and I'm wondering if I had water retention from the mirena I had. I lost 3kg in the first couple of weeks of chemo, which started 10 days after my mirena was removed. After than I slowly lost weight during treatment, overall about 6kg, and my weight is now steady, I was eating small portions and lots of veggies during treatment, but I'm eating more normally now and the weight is staying off. The dramatic initial loss I'm thinking was fluid retention. Now I'm worry I'll get that again on the hormone treatment. I'm relatively fit and do a lot of aqua and walking, eat relatively healthy, don't drink much alcohol or sweet stuff. I feel your pain and it's perfectly fine to have a winge about it. It's a long haul and I'm less than a year in and want to scream at the sky sometimes. Hope you find something that works for you.2
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Perhaps a change of routine with exercise and diet may help. The stress incontinence is common, unfortunately.
I also went down the Zoladex path.
Hang in there, tweak a couple of things and maybe you'll notice a difference!
Take care2 -
Hi @Katie46,
Im sorry to whinge when you are just at the start and are worried. Ive been compliant to all treatment and I do believe you should take the advice given.
I was overweight when i was diagnosed but I looked in proportion. I did gym during chemo. I think because I was premenopausal that the treatment has been more impactful. What stinks is I cant correct (so it seems) the earlier weight issues. Its just hard to not be able to get a better outcome for yourself.
But you know what, I havent given up in all this time. I still believe that given the right combination of things it might happen.
Im starting to think that the fatigue is just brain fatigue and maybe I can physically push through it and the exercise might actually be good for my brain. Maybe because of the fatigue i stop exercising too soon? I found a study which indicated you need 60 minutes of exercise a day and calorie control yo lose weight after breast cancer. I gym 3 times a week and walk for 30 minutes every day. Im going to add 30 min indoor cycling on the non gym days. I have tried things like carb cycling, different calorie levels, protein increasing etc. I jogged for a whole year but the fatigue was epic.
So no solutions yet but weight is not increasing just stably overweight.1 -
I thought the worst part was chemo. I have not started letrozole yet. Thanks for sharing your experience with hormonal blockers. You will hear from me as I will be definitely whinging.3
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@GorgyS its different, not worse. I think chemo is a defined period. 6 months is a reasonable timeframe you can deal with even though its unpleasant. Hormone blockers are just long and frustrating (at times). You have to grit your teeth and get into a "its just maintenance" mindset.1
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@Michelle_R - ask your GP about you trying Oxybutynin to mitigate hot flushes/flashes and incontinence.
It is more known as an incontinence game changer (hubby was on it & it gave him his dignity back.) He rarely had spills after he started wearing the patches. (His were Oxytrol Patches- the active ingredient is Oxybutynin - you change them every 4 days.). I am not sure if there are 'female' versions vs 'Male versions' ... your GP should know.
https://www.breastcancer.org/research-news/oxybutynin-helps-ease-hot-flashes
My brother reckons that I am obese (not very complimentary, eh?) whereas I think I am just comfortably plump!
ANY exercise is good for you, so well done you. An injection that is similar to Ozempic (called Wegovy) has been introduced to Australia this month, aimed at weight loss. Ask your GP about it - but be aware, there can be some nasty side effects, like major diarrhoea .... Drs are realising the benefits of using the injections to drop weight, which can help reduce other medical conditions as well ....
https://www1.racgp.org.au/newsgp/clinical/wegovy-launches-in-australia
take care & all the best
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Hi @arpie,
Thanks for your thoughtful response.
Im trying not to take extra medication to counter the medication im already on. I just wee a bit when i cough now. The hotflushes are a pain.
The lack of get up and go bothers me.
Re the weight, id say im slimmer in some areas (arms and chest) through exercise but my waist is larger a bit like a telletubbie. It is so hard to find pants for work. I used to be a size 14 (before diagnosis) and now Im a size 18.
The most annoying thing is how much effort i put in to not achieve diminishing waist.
Yesterday I bench pressed 35kg! Im weight training to improve metabolism and increase muscle. I guess Im lucky to be healthy enough to do it.
Oddly I felt great this morning in terms of fatigue. I slept really well. I mean every part of my body hurts muscularly but its an exercised hurt!
Michele
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