Good morning I was diagnosed with metastatic breast cancer last April and I’m on 125mg Ibrance/ letrezol and since I have gained a significant amount of weight I’ve gotten back to the gym but my onc told me don’t focus on the numbers on the scale are there any suggestions on how to lose weight and has this weight gain happened to anyone else? Also my legs and thighs always feel so fatigued and heavy almost as if I have lead on them is this a side effect of the medication?
Weight gain/fatigue of thighs and legs - SHARE Metastatic ...
Weight gain/fatigue of thighs and legs
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Lark78
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Hi, I am on same meds as you, sometimes my ankles are a bit stiff in the morning and have lost 6lb by doing slimming world, sometimes I do feel tired
I have put on weight which I blamed on my hip being so bad but my care team told me that this happens to a lot of women taking letrozole or another hormone blocker. I have “joked” with family and friends that I am the only person that can have metastatic cancer and gain weight. They don’t find it funny but for me it’s real and frustrating. When I asked my oncologist about the tiredness and lack of energy he looked at me and said, you have cancer! I think we forget the obvious.
Lark78• in reply to
Lol lol exactly I feel the same way I see a palliative care doctor and he has me taking American ginseng for energy twice a day he told me if that doesn’t work he’ll prescribe Ritalin for me so far the ginseng has helped but I’m still very tired...thanks for the response 😊
• in reply toLark78
I met with the oncology psychiatrist last year as I was already battling depression before my diagnosis and I was feeling worse. He asked me a few questions and then told me that my depression was not getting worse. He said I had “cancer brain”. He explained how the Ibrance plus the cancer plus the radiation I had on my neck all damage my brain. Not that it is severe but it is real and it was physical and not mental as my depression is. He prescribed me Vyvanse which is in the same class of drugs as Ritalin. It has made a difference in my fatigue and given me back the ability to focus.
Red1246• in reply to
Did you have chemo? I know after I did 10 years ago I had what is referred to as “chemo brain”. Cloudy, confused thinking etc. I’m on Ibrance and Letrozole now and notice the same occurring so wondering if it’s chemo brain or simply age-related as I’m 73. 😊
I’m not depressed, however, at least no more than usual when having cancer. Glad you’re able to focus better on the Ritalin - I’ll discuss it with my oncologist.
All best to you!
Red
• in reply toRed1246
I’m on Ibrance and Letrozole and had radiation to my skull. He said those combined caused the Cloudy head.
Red1246• in reply to
It’s the sane treatment I’ve had too though I thought, unlike chemo given by infusion, ibrance did t cause “chemo brain”. Interesting.
How are you feeling?
Take care.
Red
• in reply toLark78
I am having serious issues with verzenio and now excruciating pain in my lower back. I have no family and my friends no longer live in Brooklyn. I stayed here because I never got around to getting a driver's license. I am alone all the time. Friends email me or call occasionally but I realize they are still working and unlike me who never married and have no children, they have adult children and grandchildren.
I told my onco last visit that now I am having severe lower back pain (a month before the ct scan showed two holes in my spine from the breast cancer). It was originally and still is in the lungs. I can barely walk 1/2 block without my lower back going into such pain that i have to stop and I am crying and have to lean on something. I have nobody to help me so I go it all alone. I said to her I do not have a live, I am existing and if I feel this bad already, how much worse am I going to feel.
Anyway, I had a CT scan of my back on Friday (of course I emailed her but she never responds to phone calls or emails). Anyway, she told me at my last visit (my next is 2/20) that she is going to arrange to get me into palliative care where she said they will help me manage the pain. (What does that even mean?) And that I will tell them what my plans are for the end. Hospice at home? Can't do that because I have no family, I live alone and although a nurse will come to the apt., she cannot be there 24/7 and I doubt they will allow me to be alone. So I know that I will have to go to a hospice center.
One friend (who I have not seen in about 5 years but emails me from work) and her I know her weekends are busy as she works full-time told me when it comes to hospice I will take some days off and sit with you. I did not mean to be rude and said I don't need or want anybody to see me once I go into hospice. What is the point of people coming to see me when I am dying that never made the effort when I was alive.
Anyway, does Palliative Care actually give you real pain medication or do they expect you to meditate or chant or something? The Cancer Center I go to is getting their first cancer nutritionist and I have an appt. with her on 3/4 (she got booked fairly quickly).
I need the palliative care bc my onco is unresponsive to anything and I rarely email her but I wanted to know the results of my back CT scan bc I do not leave my apt. anymore and order in everything bc the pain starts when I start walking.
At least I would have somebody to call when I am in extreme pain. I emailed my onco two days ago for my ct scan of the back and asked her to please at least have her asst. Yan call me to let me know if they found everything bc in the interim, I am am still suffering in pain and what, have to wait until my next visit. As expected, no response.
Do they really help. I do not know what to expect. But I am at my wit's end with the pain and the 800 mg. of ibuprofen I was given months ago for my breast tumor pain no longer works at all.
I feel like I am floundering on my own. And on top of it major depression seeping in. It is hard when you are totally alone for days on end with nobody to talk to bc they work.
I just need to know if they address the pain and actually really help with it. I am either very depressed or very angry lately and going crazy from being inside all day long. Thanks.
• in reply to
When I was first diagnosed Pallitive care was set up to come and visit me. I saw them no they for the first year until we decided I was doing well and didn’t need them. They helped me immensely with pain management. They know which pain meds work best for my bone pain. They did more for me than my family doctor or oncologist did in terms of helping me with pain, understanding MBC, helping me recover from radiation, dizzy spells, vowel problems etc. They asked lots of questions and gave me Info on every aspect Of cancer. Even a year after I stopped seeing them I called the Pallitive nurse about an ongoing problem and she knew how to deal with it while my family doctor had me going in circles. I can’t say enough about how great my Pallitive team was.
Lark78• in reply to
Do u have an email address or phone number I would love to chat with u. I’m currently off work so I’m home all day everyday I get lonely too.
Red71• in reply to
Since your friends are no longer in Brooklyn, would you consider moving to some place that might fit your needs better, have a cancer center that is more responsive, and possibly less costly than living in Brooklyn, which I assume is not a cheap place to live? I have no idea of what that perfect place might be, but I think I would be thinking about it.
Palliative care definitely should be able to help you with pain. It definitely doesn’t mean that they think you are going to die, people go on and off palliative care as their needs change.
I really hope you can get some help to eliminate some of your pain and help with your feelings of isolation. We all need to plan for that part of our life where we can no longer care for ourselves, not only bathing and dressing, but shopping and cooking and all those other things we take for granted.
Hugs, Elaine
Geulah• in reply to
I think you should consider switching doctors if you are not pleased with current doctor. You can ask on the site advice and recommendations. You certainly are not receiving effective pain relief medicine, bufferin is not enough. Palliative care is NOT hospice care.it is pain and symptom management. I twisted my back and actually broke a bone...Palliative care nurse truly helped me to with pain relief drugs., when and how to use them etc She was helpful and encouraging. Radiation is known to be a successful treatment for bone Mets. It is relatively easy treatment ,fatigue is usual side effect.
My oncologist recommended radiation to the back...
I did a few rounds and Thank G-D after a couple of pain filled months that I could barely function I slowly went back to a normal routine. Pease look into it.
Perhaps ask here names of organizations ,hotlines etc that cn help you find a volunteer advocate. Someone who can advise and help you through the process. There are so many organizations out here. Good luck good news and full recovery
Klamato• in reply to
Where do you live and how old are you? It sounds like you are giving up and you really don’t have to! Please join a cancer group and establish friendships with those that are going through some of the same things! Being lonely, and being in pain is the worst! Sometimes, I think it makes the pain worst! Do you have a church that you belong to? Reaching out DOES make a difference ! God give you the strength to Do just that! Please don’t give up, life is good and you can be enjoying some good things. God bless you!
• in reply to
When I was diagnosed with stage iv breast cancer, I was trying to find a silver lining and I said will I be losing alot of weight (since I was already overweight) and they said No, as a matter of fact, you will be gaining weight because of the meds and boy they were right.
Hi Lark,
Weight gain is a well known side effect of aromatase inhibitors. I'm not sure why it happens, but even with women who go through the menopause naturally I have seen how they often gain weight. I remember meeting my oncologist for the first time and as soon as she was done with me, her oncology nurse took me into the day unit to give me my first zoladex injection and go over all the possible side effects of zoladex, zometa and letrozole. Weight gain was mentioned. I wasn't happy about that, as I knew that it would be something extra to have to deal with, so I was already thinking ahead about how to improve my health.
One of the first things I did was to increase my water intake. I was really naughty about this prior to my diagnosis, but I would often allow myself to become dehydrated. So I would have regular headaches, tiredness, fatigue and I fainted a few times too when I ended up with heat exhaustion (I told you I was naughty!) I went from drinking very little water to about 3 litres overnight. That can make a big difference. I also cut back on my sweets, chocolate, cake, that sort of thing. I still have them from time to time, as I don't believe in depriving myself of everything that brings me pleasure.
Another plan of action was my exercise regime. I wanted to do more exercise right away, but it didn't work out the way I expected. I spoke to my GP and asked her for some advice about some safe exercises that I could do, and she mentioned cycling and going to the gym. I didn't fancy getting squashed on the roads while riding my bike (motorists are not very patient with cyclists where I live), and I liked the idea of going back to the gym. But before I started all that I thought about swimming. I went to the pool in town and soon regretted it. I came back home and slept for the rest of the day. So I had to go back to square one. I then decided to start using the outside gym near a local nature reserve. I started with just a few minutes each day three times a week and then gradually increased the time until I was working out for 30 minutes. I am currently using an exercise machine I have at home (healthrider) as I didn't want to workout in the cold over the winter.
The best bit of advice my GP gave me was to take it easy and not overdo things. So if you want to start exercising, or doing more then I would speak to your doctor and find a way to add more. I would start off gradually. Something else I do is write down the days I have worked out. I have been keeping tabs since October. I try to aim for 30 minutes a day, but I take time off, and do not beat myself up if I miss a few days.
Sophie
P.S. Sorry for the novel! I have a tendency to waffle on at times!
Lark78• in reply to
Thank u so much for your insight I really appreciate it I’m just going to take one day at a time and try not to get so frustrated myself.
• in reply toLark78
Taking things one day at a time is a good place to start. We can all benefit from slowing down the pace and taking out more time for ourselves. ❤
Yes, I had that same sensation in my legs(especially the muscles in my thighs) while I was on Ibrance. Just like you described, they felt heavy and tired. Before Ibrance I was able to walk for hours. While on Ibrance, I couldn't walk beyond one hour. It felt like there were weights strapped to my thighs. My oncologist and physical therapist tested the strength of my legs and they thought there was nothing abnormal. After I switched meds (when Ibrance stopped working), my legs felt better and stronger.
Yes that’s the exact the same feeling. I thought I was just imagining it I hate the feeling losing power in my legs and thighs. Thanks for the response I’m just working out and hoping that will help my thighs and legs not feel so tight and hoping I’ll lose some weight too. 😊
HI,
Sorry you're experiencing this.
I too have fatigue as this is a side effect of both drugs we're on.
So far I have no remedy other than listening to my body when I'm really unable to do much and have a 30 minute nap. It helps me to carry on with rest of the day.
I haven't gained weight (yet) and it's a concern of mine as last time I had breast cancer (10 years ago) I gained 20 lbs. and was never able to take it off. I've just recently switched to a plant based diet which is supposed to curb inflammation, the cause of various diseases including cancer. I'm eating lots of veggies, fruits, ancient grains; am allowed some cheeses but otherwise no dairy; chicken and turkey and certain fish plus eggs. It's not at all bad and I'm told this way of eating is also conducive to weight loss. You might do a Google search and look into it.
Take care and all best!
Red
Thank u I have been thinking about changing my diet to a plant based diet just wasn’t sure how to get started I’ve just been doing little things here and there eliminating certain things from my diet, working out, and trying not to get frustrated. Thanks for the response I really appreciate it. 💜
I’m told to drink more water, do some yoga, also eating lots of watermelon!! Watermelon is said to really help cancer! I’ll try anything! God bless!
My son ,a resident doctor is always reminding me to point of nagging ,to eat
From his experience extreme weight loss is an obstacle to healing ,so no it's not fun but actually better than the opposite, loosing weight is dangerous when in treatment. I lost weight,enjoyed it at first but now when gaining is not easy realize a few extra pounds is better for you. Saw an interview with the star of TV show Rhoda ,she beat the odds and lived quite a long time with a zero chance diagnosis. She was a living example of keeping positive, worth watching. Try googling Valerie Harper and diagnosis etc. She mentions weight gain and how she put it in prospective
As a semi obsessed person with keeping thin, I needed a real switch when it came to eating. I still believe eating healthy is important to health and well being. I eliminated most forms of sugar,White, brown even honey at the advice of a nutritionist doctor. Including limiting fruits tonone or two a day, no fructose either. Side effect of that and lowcarbs usually helps to keep weight down.
Main thing is to stay positive, a real challenge. Wishing everyone successful treatment well being and good news.
Thanks for sharing this good information!
Good luck to you in your treatment.
All best, Red
You too....Looking forward to sharing good news from everyone.keep up the good work!
Thank you! Enjoy the weekend. It’s a beautiful day here in Northern California and I’m grateful to be here - MBC and all! 😊 K
It's so beautiful there. Haven't been there is many many years... some very peaceful places. I live in Northern Israel...also quite beautiful but right now stormy and well needed rain is falling. Enjoy...good for you
Yes, it is beautiful here with a great climate. Probably not so different to that of Israel. We’ve had some well needed rain as well this “winter” and for us it’s been cold with temperatures in the high 40s/low 50s. Never lasts long though. Although I greatly miss life in Amsterdam, where I lived for 18 years, I don’t miss the 9 months of rain and grey skies. Everything in life seems a trade-off, don’t you think?
All vest to you! Red
No perfection at the moment...day will come. Nine months is a long time,didn't know that. As New Yorkers we always said "sunny California ". Less so in the North but so so beautiful.
Yes, pretty much the case in the Netherlands. The only thing I ever found wrong living there. So you’re originally a New Yorker! Love the city but it too has climate issues for me. Too hot/humid or cold/snow.
I’m in Napa Valley and blessed with 9 months of sun and not often too cold and sadly, not enough rain most years.
It helps with my occasional blues if feeling low to look out at a blue, sunny sky. I’ve learned to be grateful for each and every day I awaken and feel well even if I’m not. 🙏🏻
For me being in Nature brings me closer,or more aware of the Creator,which in turn reminds me that I'm in good hands,calms me down...and for sure with this very not easy challenge somehow an even greater appreciation and thankfulness we all tend to take for granted. I also.enjoy watching cloud formations ..so beautiful. Even got to fly above them,took a short but sweet faction to my daughter in Delhi.
Love India! How fortunate you were able to visit your daughter there.
Yes, nature is the best cure. ❤️
Delhi....not the prettiest part
My oncologist doesn't want me to lose any weight either..I want to be smaller, because I feel like it is more healthy...he said no more then 10lbs...😥
Hello Lark, I find that being on those meds makes me retain water especially in my legs and feet. This makes them feel like logs and makes my ankles quite stiff. I have mentioned to my dr several times and she checks (push into your leg for a minute does it pop right back or leave an impression - if it pops right back it’s not water retention but if the impression stays you are retaining water). The water and loggy feeling in my legs makes me get tired much easier and adds its own fatigue. When my dr checked she never seemed concerned about the amount of water I was retaining, but if you have bring to your Drs attention just so she can keep track of. When it was at it’s worst my dr did give me a once a day - morning - prescription for lasix. It may or may not help you.
Yes, weight gain has been a problem for me too, trying to lose is tough on this medication. Drinking a ton of water has helped and cutting the carb too helps! Who need this on top of what we warrior have to deal with! I feel your pain! Kathy
Ok will do I will bring this to her attention. Thank you for the response I appreciate it.
When I mentioned to mine how distressed the weight gain made me, I was told that it is very, very normal with our meds. BAH! But I'm rolling with it.... grrrr.
I am on Ibrance and faslodex shots and I have gained weight too. I said the same thing about how can I gain weight with cancer, but I also found myself gaining on Letrozole after my first dx.
I bought myself a small apartment size treadmill and it is helpful.
I wish you well in your treatment and know that you will find a way to get back in shape. It is an adjustment!
Lark, I am over weight and my doc's are glad. They say weight will help in the long run so I just eat what I want. Blessings Hannah
Blessings to u too that makes me feel better 😉
I have brought up my weight gain to my onc several times and she doesn't seem to be alarmed. I have gained nearly 40 pounds in a year. I know this is abnormal. I have tried to increase my water intake and add light exercise. Most importantly I'm relieved that others have the same issue. Thank you for bringing up the topic. I am open to any suggestions.
I too have gained weight on Ibrance and letrozole. My oncologists are not concerned either.
Hello-I am on the same meds as you and I have diabetes too. My legs are stiff and heavy so yes I feel so tired. Sometimes I feel like I can’t walk with some days being worse than others. It could be my diabetes but no I believe it’s the letrozole and Ibrance causing it. I am going to the ywca and doing splash exercises that have helped some. The truth is I wish it could be better and if anybody has found something that works please let me know. Hang in there !!! We are alive and I know things will never be the same -I am trying to loose weight but I haven’t gained from the meds- just fat already . It could be arthritis from years of being heavy.. 🙏❤️
Thank u for your response... Yes we are alive and I have to remember to be more thankful for that and quit always looking at the negative...Enjoy your day prayers to you 💜
No one seems to mention if they were menopausal before taking Ibrance. I took it after menopause. Does it bring on menopause, for that more often than not under normal circumstances brings some weight gain with it....not to mention mood swings.
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