Wellness?

[Toomanyquestions]

So I’ve not been here for a while as many of you know I had very bad depression after I was hospitalised and diagnosed with MBC at the same time. After some full on operations I was put on antidepressants. Which made me extremely suicidal and have since been hospitalised again. I asked my onc if I could choose to stop treatment as doing this with young children breaks my heart every second of the day. Obviously he wants me to continue but I don’t know if having a seriously mentally ill mummy is better than just saying goodbye. They think I react very badly to the Zolodex which causes severe depression in some cases but there is no alternative. Can I ask do any of you actually feel well?

[Hidden]

Hi Ellie,

It's good to see you back here. I'm so sorry to hear that you have been having such a hard time with depression, as well as dealing with this disease. I imagine the two must be a very bad combination. If you are having a hard time tolerating zoladex (I have the injections every month too) perhaps you should consider having an oophorectomy instead. Has your oncologist mentioned this to you as an alternative? If you have your ovaries removed then you will no longer need the injections and maybe that might work better for you. But that is something you will need to discuss with your oncologist.

You also asked if anyone on here feels well. I don't want to make you feel worse, but I feel very fit and healthy with minimal side effects. I know we are all individuals and can tolerate the drugs better than others, but if your quality of life has been impacted so badly then there have to be other options for you. I would not encourage anyone to stop treatment (others might feel differently), but to see about dealing with the severe side effects so that you can start to see an improvement to your life. That might mean different pain management, physiotherapy, complementary therapy, different anti-depressants, palliative radiotherapy or other forms of palliative care. Reach out to your local Macmillan centre or oncology nurses and let them know you need help. Or look into getting some counselling to help you deal with the emotional side of things.

Take care,

Sophie x

[Toomanyquestions in reply to Hidden]

It’s the fatigue, I’m literally in bed most of the day, not helped by the leg operations. I tried painting last week but I just couldn’t concentrate. I seem to have lost myself!

[Hidden in reply to Toomanyquestions]

If you are still recovering from surgery then you will need to rest and heal fully before you can turn your attention to the fatigue. You don't want to overdo it. Have you had your vitamin levels checked? Maybe you are deficient in vitamin D or vitamin B12. If so, you can look into supplements to help with that. I had my levels checked a few months ago and they were normal, but it's good to ask your GP to order a blood test for you just to be sure. What I found helpful when I first started treatment was learning to listen to my body. I took things really slowly and made changes very gradually.

[Hidden in reply to Toomanyquestions]

Are you on 125 mg Ibrance? I switched to 100 mg to manage fatigue and it made a huge difference. My recent scans were ok so the lower dosage still works.

[Glas0824]

I also have young children and although I tolerate the zoladex the Ibrance makes me very low and tired. I’ve taken a break from it to enjoy the summer with my kids.

Keep going. I have had moments like those you describe but they pass. I feel like I spent the whole of March in bed crying. I am so glad I didn’t give in. I tried anti depressants but they made me worse.

I have returned to work and it has been heart wrenching how hard I have found something I once took in my stride but I’m three days a week and loving it. I’m away on holiday on Saturday with my kids- genuinely I could never of imagined being able to do these things a few months ago.

Get your b12 and d checked - taking b12 made a huge difference to me.

There’s different drugs put there - ask about them.

But keep going! Joy is possible again x

[Stage4Gir]

I’ve had bad days and crying jags too but then all of a sudden my body is getting used to the Ibrance and I started to get my energy back so yes it is possible to feel better. I agree you should just rest and heal right now and start to plan things in the future with your kids for when you feel better. It will give you something to look forward to and depending on their age maybe you could even tell them. One day at a time is all you have to do. If today isn’t good tomorrow might be better. I can assure you the kids would rather have you around. Keep going. If not for yourself for them. There are many options you just have to find them. Different drugs may help. Keep us posted please. This site has been so helpful for me when I need to vent and I don’t write enough when I feel well. I’ll try to change that so some like you can see it is possible.

xo Debbi

[Francesca10]

Hi Ellie

I know you have been struggling and I feel you.

First get another opinion if you can. There are so many treatments. I am not one of the healthier ones; June was very rough month for me with side effects from treatments that spiraled me down in every sense. I wait, cry, vent, rest, vent and get back up again. Sometimes I can’t say why. My kids are grown, grandchildren too but I have a little grandson I am so in love with and he knows me since birth and is attached to me also. Many days he is the reason. He was just diagnosed as autistic/aspberger and my daughter is really struggling. I need to be there for them even when I don’t want to be. I don’t know what normal is for me anymore. It’s a rollercoaster.

This is 3 years in. I am tired; you still have to heal from surgery. Ellie, all I can tell you is what I do— keep trying. My pet scan coming up july5 - I am scared- I have such bad side effects from faslodex and ibrance that I don’t know what news would be bad at this point. I know as we all do how devastating this all can be. Please hang on- your little ones need you. They can understand mommy is sad but not having you would be such a disaster for them. Also please see a therapist- there are ones trained for this. Call the SHARE line- someone is always there for us.keep trying, hold onto us, keep sharing, keep trying. I will hold you up in prayer and love n hugs to you.

♥️Frances

[nstonerocks in reply to Francesca10]

Frances, great advice to call SHARE. I have called a few times when I was really low. It really helps,

[nstonerocks]

Oh my gosh. You sound a lot like me when first diagnosed. I was older and didn't have young children. I can't imagine dealing with that amidst all the rest. I wigged out. My oncologist was called up to the infusion floor because I told the social worker, who unfortunately poked her head through the curtains and asked me how I was doing, that I felt like killing myself. And I wasn't using a metaphor. My anxiety was off the charts, and I was very depressed. Wanted to escape how I was feeling. Everything seemed dark and hopeless. If I were going to die, I might as well get it over with. I was not hospitalized because my husband was with me and they watched me phone my psychiatrist and make an appointment. I promised to be good. I had a history of anxiety and depression, which was managed on and off with therapy and drugs. This diagnosis was like lighting a flame to a keg of dynamite. I'm telling you all this because you are not alone in going off the rails, especially when newly diagnosed with an illness like this. You cannot think rationally when you are so overwhelmed, so keep that in mind. I don't know that you're seriously mentally ill -- you are in a serious crisis right now, and as my oncologist said to me back then, she was more concerned with my mental state than my breast cancer. Your kids need you. My advice? Work through this and take all the help you need. It's about you right now. Take meds if they help. Get to a calmer, more centered place where you can think about this rationally. You will probably go up and down dealing with this, I think most of us do. But you can have a life you want to live if you and your team manage your anxiety and depression. To answer your question, do any of us feel well? Honestly, for the most part, yes. I don't do all I could to optimize my health, but I'm going to start (again). There are days when I feel tired as hell, had to suspend Ibrance for a month. There were times on letrozole I felt like I was 99 years old. Overall, 5 years in, I'm glad I hung in there. I've had great times with friends and family, and I've tried to be a calmer, nicer person and let the little crap go. It's not easy, and I'm not going to tell you that you won't have days when you go off for a good cry. But the time spent with your family, when you are in a better place mentally, is pure gold for you and especially for them. The future for us??? The prognosis is what it is. If you can rationalize it and tell yourself that NOBODY knows when their time is up, even the healthy person getting up tomorrow has no guarantee that they will be alive the day after. Of course, we have it in our faces. That's the part you have to work on. Not to let this hang around your neck like a boulder pulling you down. It will some days, and you need a plan for when it does so you do not sink. There is always the chance that the next med will give you so many more years when what you're on stops working. And if it doesn't, you gave your kids the gift of your presence in their lives. Please hang in there. This panic mode will get better with time and help. And when it does, write your bucket list and start ticking it off.

[Hidden]

When I completed my BC treatment in 2014 after my second diagnosis, I had an awful time. I could not get out of bed, couldn’t eat, etc. It was like a delayed stress reaction. Eventually I went on either Klonepan or Klonizipam. Sorry I can’t remember which it was or the correct spelling. Slowly, like a window shade gently being lifted, I found relief. Six months later I was even able to wean myself off that med. I wouldn’t have believed it myself. I’d never struggled like this before and could not understand how I could possibly improve. But I did. I got our daughter through college and settled in her new job and apartment. It is so hard to find the right “cocktail.” Yes, I was blown away when I received the MBC diagnosis in June 2018. But I am much better equipped now. Fair warning: I was given Xanax in 2014 to manage nausea, and no one warned me about what is called “rebound anxiety” if you take it too long. I wish I’d known then what I know today. I now occasionally take a low THC CBD tincture when I’m stressed. When you’re overwhelmed like you are, it’s essential you find what works. I am very sympathetic to you. I hope you get relief like I fortunately found. God bless you.

[klhowe]

Having my ovaries removed, Ibrance 100mg, Letrazole and Xgeva have been working well. My bone mets are stable and the liver used to have 7 tumors, now there is only one. And the one left is smaller than it was 3 months ago.

Don't give up, try different options until you find the right combination for you.

[Barbteeth]

Ellie darling PLEASE don’t give up on your treatments

I’m going to tell you a little story about when I was 6 years old...my mum didn’t have cancer but she was hospitalised for severe depression/suicidal after my sister was killed in a road accident ...in those days she was treated with EST and Valium...kids weren’t allowed to visit and I remember someone holding me up so I could wave to her through the window...all her life she was on Valium...smoked like a chimney but she was there and she loved me....the point I’m trying to make is that whatever illness your mum suffers from...she’s your mum and you want her no matter what...your children want you whatever state of mind you’re in

As you know from other posts I also tried antidepressants and therapy...both of which I abandoned as they weren’t of use to me but everyone is different...I’m much better if I get out amongst people or animals

There’s many times when I’ve wept on my horses neck ( first time I’ve admitted this) because I hate crying in front of people

I’m fed up st the moment as in the middle of radiotherapy and I was nasty to my husband yesterday when he offered to take me to the hospital...went on my own!!

I know it’s different for you as you’ve had surgery...anaesthesics make you depressed anyway without all the other stuff on top

Remember your body is an amazing bit of kit and will heal from the operation...as some ladies have said on here...discuss with your oncologist what other treatment options can be used as there are many out there...it’s hideous I know but maybe when you’re back home try a little treat each day just for you...even if it’s something crap like having a manicure or go to see a movie...anything to distract you from your sadness

We all really understand

As for feeling well...it’s pain that gets me down and tiredness but I just take loads of painkillers even though they mess up my stomach but if I don’t then like really would be unbearable so I accept I have to do it

All the best to you

Barb xx

[Barbteeth]

Me againI’ve just read Sophie’s post about getting vitamin levels checked...one of my girls was really tired and lethargic a few years ago and we thought maybe get a haemaglobin test...it ended up that she was Vit D deficient...this is a girl who spends her time outdoors and fit as a fiddle but it made her feel so tired

Started taking Vit D and never looked back

Worth checking just in case

Barb xx

[Hidden in reply to Barbteeth]

Thanks, Barb. I'm so sorry to hear about your sister. Thanks also for sharing about your mum. That must have been hard to share, but I'm glad you felt able to do so.

I first had my vitamin D levels checked a few years ago (perhaps I had cancer then that was undiagnosed) and I was severely deficient even though I was out in all weathers year round. You can feel completely drained if you have a vitamin D deficiency. It is hard to sleep, even though you are exhausted. Since I've been taking Adcal D3 I feel great. It's the only supplement my oncologist recommended and I get it on prescription. Of course, I take more than that, and plan to take more once I get my recent test results back.

Sophie x

[Barbteeth in reply to Hidden]

Yes I take those...the chewable ones

Barb xx

[Hidden in reply to Barbteeth]

Oh yes, I remember you mentioned that before Barb. I used to take the chewable kind too, but switched over to the tablets. It means I went from taking two a day to four.

Sophie x

[Barbteeth in reply to Hidden]

I take 3 or 4 depending if I remember...don’t take at same time as iron as it stops absorption of iron...it’s the calcium

Barb xx

[Hidden in reply to Barbteeth]

Maybe you are taking a different chewable variety of Adcal D3 to the one I was taking, Barb, as my dosage was two a day. I didn't like the tuti fruiti flavour. If I'm going to take a supplement or tablet I would rather it was plain. I don't want to feel like I am eating sweets, but that's just me! That's interesting about the iron. It's so important to be well informed.

Sophie x

[Barbteeth in reply to Hidden]

Anything with calcium..I.e milk yoghurt cheese butter will reduce iron absorption so I have to take my iron separately...taking iron with Vit C increased absorption

I take more than two of the Adcal chewable tablets as my calcium was too low and I couldn’t have my denosumab

I agree the tutti fruti ones are vile!!

Barb xx

[Hidden in reply to Barbteeth]

Ah, OK. That makes sense! I hope that your iron levels are improving and that the iron infusions helped.

I'm glad I'm not the only one who hated those tablets. I don't want to take those again!

Sophie ❤

[Nmartinez15]

Hi, I am sorry that you are going thru this. I was under antidepressant for my first marriage/divorce. Zoloft is horrible by the way and then I was taking lexapro for 1 year due to my divorce. I realize after a year that I need to help myself without drug/meds. It was easier by then bc I was not sick with cancer. I start going to the gym alot and that help me tremendously with my depression. The meds help but at the same I didnt like the side effect so I stop right away which i don't recommend. I did it bc i was only 32 and overall healthy. Now my onc want me to take them again which I said no. I already too tired and sleepy all the time and with drug it will be worse for me. I dont feel depressed either, but I have terrible insomnia and hotflashes interrupt my sleep. So I take ginger root, cinnamon with honey every single night sometimes twice a day. I made the tea strong and that put me too sleep and relax me. You should give a shot! My husband is taking now too bc he have insomnia all.his life and he get relax too. I also curcumin pills with Ashwagandha that help with stress and mood. Most need since I am dealing with early menopause bc they removed my ovaries in January of this year! Look into different options before quit and try to see if something natural can help u.

[Purple60]

Dear TMQ it is very hard to no what to say other than to give you love and encouragement. Of course we understand where you are coming from and to have underlying depression to begin with is bound to make anyone feel uncomfortable. Perhaps one suggestion is to get a second opinion as there are many other options available to women with mbc if you are not comfortable taking Zeloda. I applaud you for weighing things out in your head and reaching out to others. To answer your question directly, I can say that I feel well but there are times when it hits me harder than others. I believe I speak for everyone in saying that this condition and our mortality is ever present in our minds and I suppose finding the right support system and outlets for our fears is very important. I pray that you seek out additional emotional health and a 2nd before you decide to discontinue treatment. And I pray most of all that you find peace with your decision.Hugs sent your way!

[mariootsi]

A palliative care doc may help alot! They work with all the physical side effects as well as any mental health issues.

I feel like depression is just part of the meds side effects and also the shock of finding ourselves with mbc.

There are always options to discontinuing treatment. I hope that with some help you might reconsider that decision.

Love,

Marianne

Keep posting as the support is amazing here!

[Mindysooty]

Oh my heart goes out to you. It must be so difficult if you have young ones. I have kids but theyre adults so its different. I dont know if you've had counselling before but it sounds like you need to talk to a professional. Kids are so resiliant and adapt to things so as hard as you think it is for them, Im 100% sure it's better for them to have you there with them. Ive never sufferred with depression so I can only imagine how hard it is for you but please get some help and/or seek a second opinion of your treatment/meds cos that might help too. What seems so bleak today probably wont seem as bad tomorrow. Sending hugs and best wishes 😚

[Kimr2081]

I suffered from depression also because they had to change my anti-depressent from something I was on for 13 years and worked beautifully to something else before I started a trial last year. So not only did the side effects from the trial kick my butt but the depression and anxiety came back with a vengeance. I was trying to get back on track with my internist but finally went to see a Psychiatrist who has helped me find an antidepressant that works and I am feeling so much better. That damn anxiety is not completely under control but I pop a Klonapin when it gets to crazy. Maybe seeing a psychiatrist would help as they are so familiar with all of those types of drugs.

KIm

[diamags]

Dear Ellie, it's nice to see you on again. I'm sorry that you're having such a hard time. As a few have posted, please consider having your ovaries out (oophrectomy). I too have had my ovaries out. It's a very easy procedure -- I went out for dinner the night I had it done. I've never looked back. No more Zolodex shots. I hated them. It's something to seriously consider. Also, if you're post-op, please allow yourself a little time to heal. Anesthesia takes a toll on our bodies -- that's just a fact. Rest when you need to. There's nothing wrong with needing to sleep. I've gone through some periods where I've slept 10 hours per night. Nothing wrong, just tired. As it has been mentioned, this is about you. You need to take care of you. Nobody else -- well, let your husband help with the children. As Barb mentioned so importantly, your children want you. They aren't going to care if you sleep more than you used to or if you can't run marathons with them. If you can hug and kiss them, that's exactly what they want and need. There is so much going on in the medical/research community. Every day we live we get closer to being able to capitalize on new and improved therapies. Please do not give up.

[LadyPastor]

I know the depression can be devastating. I have found ways around it and to keep it under control. But they are not physical, but spiritual. As far as you wanting to just stop treatment and letting it go I have had an experience that may sort of help you see it differently. It did not involve cancer but in 1988 my 8 year old son died of Leukemia. All I wanted to do was hold him one more time, I felt I had not finished my job given to me by God and that is to raise him. I just wanted so bad to go with him. But a well thinking friend at the time told me I needed to stay strong and here for the other 3 children (ages 5-10). It did give me something else to focus on besides the grief and it helped me get through. After all, God also gave me three other children to raise and my job was not only not done, I now needed to be there for them to grieve.

I am a pastor also so if you think talking to one would help, please feel free to contact me.

[Barbteeth]

Oh thank you Sandra

Yes some things from childhood never ever go

I miss my sister even all these years later and wish she was here to confide in....I don’t really remember her even though we shared a bedroom and apparently used to look after me...in reality I probably cramped her style!!!..she was 16 when she died

Hope you’re a bit more settled today

Barb xx

[BeckyinMaine in reply to Barbteeth]

I always enjoy your posts. You are straight forward yet very compassionate. I too lost my sister, my only sibling, when she was ten. Like yours, it was a fatal accident. I too miss her now as much as I ever did. In part, I think because I am dealing with a 93 year old mother who is slipping into dementia. It would nice to have someone to share the challenges and the better memories.

I also tried anti-depressants and therapy. Still doing some therapy but hated the anti-depressants.

I too am an avid reader. I've just found Rhys Bowen -- nice light mysteries, reasonably well written.

Thanks for your good posts and strength and healing to you.

Becky

[Barbteeth in reply to BeckyinMaine]

Hi Becky

I’ve just read your post...so you’ve also experienced the loss of your sister and understand how devastating it is

My sister was called Cecelia and she was just starting a student radiographer course..so sad...I miss her every day

So sorry about your mum...a lot for you to deal with

All the best

Barb xx

[Toomanyquestions]

Thank you to all of you who have replied I’m not in a great place to reply to each of you just now but I will Xxx

[Hidden in reply to Toomanyquestions]

Take good care of yourself, Ellie. I hope that the encouraging thoughts here have helped you feel better and given you some ideas of what you can do. x

[Barbteeth]

Sounds like you’ve had a super day

It’s hot here and I’ve been out for lunch as well...no booze though!!..gives me a headache in the sun

Going riding very early tomorrow with a chum as forecast is 30 deg...very unusual for England...the flies are a pain for the horses and whatever fly repellent I’ve used none work...I even made my own and it smelt vile but didn’t deter the flies...only way to get rid of them is to ride fast then they can’t settle

I read all the time and often run out of books so I reread my faves...going through the Kate Atkinson ones at the moment...one of my fave authors

Going to a talk and book signing on Wednesday...Mick Herron...love his books

Enjoy the rest of your weekend...so glad to hear you’re feeling good!!

Barb xx

[Hidden]

I have battled depression for years and my first year after diagnosis I was in a fugue state. I basically felt nothing. The good, the bad, it was all the same. My doctor increased my Cipralex and tried some add ins but they didn’t work. I was extremely fatigued as you know you get with depression. The oncology psychiatrist tried a different drug which didn’t work and then added Vyvanse to be cipralex as he said what I was suffering from was a cognitive problem due to my cancer meds. I still take my cipralex but I’m not nearly as tired and have so much energy and I want to get up and do things and go places. This may not work for you but keep talking to your doctor until they find the combo that works for you. Depression is a nasty nasty disease that makes us doubt ourselves. You don’t really want to leave your kids. That is the depression talking. Please talk to your doctor and family. ❤️

[Toomanyquestions in reply to Hidden]

Thank you for your encouragement I will take that on board x