So glad I've found you all

[Lulu4545]

I've been posting a lot these last 24 hours.

I'm sorry. I feel I'm taking up a lot of space.

I've just been feeling so lonely lately and I'm just so happy to be able to share and get information on what's happening to me.

My kids are on holiday tonight for 2 weeks. I'm looking forward to spending time with them also.

Hope you all the best.

Lots of new treatments to keep us going for a long time and better some kind of cure.

I know they're close.

Have a nice day.

Lucie

[Teddielottie]

Morning and welcome on here ! ( from U.K. ) I can truly understand your worry as I have been there ... the positive news I can give you is that I have been on the same treatment as you for some time , also bone mets de novo , and have done really well on it so far ( 3 years on Ibrance / Letrozole this month) and I have tolerated the side effects . I always tell people to drink lots of water as I believe it lessens many of the side effects , and to keep moving ! But if there is anything I can help answer on this treatment just ask ! Take care and enjoy the kids Xmas holiday ! x

[Lulu4545 in reply to Teddielottie]

Thank you so much for answering. Well, I do have a few questions.

I've been on Ibrance since June. For the first few, just no side effects.

For about one month now, I'm starting to feel a bit dizzy, like unsure of my balance. I had this feeling before when I get panic attacks.

But this time it's different cause it's almost all the time and mainly when I'm tired. My doc says it's due to my blood count.

I also have problems breathing deeply.

All this could be stress but...

I know I have been complaining about back pain for about 5 years now and my doctor used today it was nervous and gave me xanax.

It did the job and still does surprisingly, but it's very addictive so I keep it for when I need to go somewhere and I can't back out.

Anyway, do you have these symptoms?

Thanks a lot

[Teddielottie in reply to Lulu4545]

I think I have had all the side effects at some stage , but luckily usually one at a time ... I have found ways on this site from other ladies on how to lessen the effects .

I am fortunate not to currently have pain ( I did in the first few months in my bones ) , but I do get stiff knee / hip joints from the Letrozole . (I am nearly 57 ) .I try to keep moving as it happens if I sit still a long time . My onc prescribed Adcal ( calcium and vit D tablets) for my bones and I take a vegan glucosamine tablet daily for my joints .

If I feel a bit dizzy or weak I just take a rest and drink lots of water ... it could be from the meds and / or from low wbc /neutrophyls ( but I have been fortunate that my Neutrophyls have stayed above 1.0 so I haven’t needed to take Ibrance breaks ). I take my Ibrance / Letrozole after my evening meal with 500ml water. I eat a balanced diet ( I’m long time vegetarian but eat dairy) , and I get daily exercise , but so far I haven’t done much else ( re . supplements/ alternative therapies) . I do think it is important to minimise stress too ! I have learned to pace myself and take a rest when my body tells me to ... but I do get out for e-bike rides in good weather ... or now I go on my recumbent exercise bike daily (while watching tv !!)

Many ladies get some breathlessness on Ibrance , but if it gets bad / doesn’t go away , do let your onc know ! It is very rare but some ladies can get a severe lung inflammation from Ibrance ( Interstitial lung disease ) .

Also I don’t know if you’re on the full 125 mg dose of Ibrance ... if so , your onc may consider lowering it to 100 mg , as research now shows ladies do well on this too . x

x

[mariootsi]

Lucie don't appologise for posting! That's why we are here...to help each other through lonely tough times.

[Hidden]

Hi Lucie,

I have responded to some of your posts, but then realised you are new here, so I want to take this opportunity to welcome you properly. Please don't apologise for posting. That is what we are here for, to listen, help, advise and just be a sounding board if that's what you want.

It is normal to feel lonely with this disease. I used to feel that way too until I found this site and connected with other ladies in the same situation as me. Once I realised there were others out there like me I no longer felt so alone. Sharing your thoughts and feelings is incredibly therapeutic! Please continue to post and to join in with discussions. That's what can help keep us going. Some of us share things on here that we do not even share with our closest friends and family.

Take care,

Sophie x

[Shelby4now in reply to Hidden]

So true..... I express my feelings and thoughts on this site before I talk to my friends.

No judgements

Take care be safe

Shelby

[Hidden in reply to Shelby4now]

Hi Shelby,

I'm glad you feel able to express how you are feeling on here. The ladies on here are for the most part very kind and encouraging. You feel a sense of camaraderie with one another.

Take care,

Sophie 💐

[8576]

Just want to add a welcome to you Lucie. As said, don't worry about posting. We all love to hear from each other and find out each other experiences on our Cancer journey. We all can relate in some way, to your experiences. I think one of the worst side effects is Stress. Good that are paying attention to your stress and taking care of it. Many times we tend to try to push it in the background, hoping it will go away or telling ourselves it doesn't exist! Ha.

Wishing you well and keep on searching for answers and posting here!

Cheers, June S.

[hdhonda]

Hello lucie,Welcome to the board. You will make new friends here. Blessings Hannah

[Tolife_18]

Hi Lucie, please post as often as you need and don’t apologize for it. This group is the sisterhood that supports us in a way the family and friends can’t. It made all the difference in my life. While some of the symptoms could indeed be due to stress, please don’t let your oncologist just dismiss it.

Be well and Happy Holidays!