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Happy & Hello

CharaMasiakou profile image
20 Replies

Hello Ladies

My name is Chara and i am so happy that i found a blog for metastatic breast cancer.

Now I am 35 and i get diagnosed before 5 years when i was 30. I had my mastectomy at the day of my birth (!!!)

So....4 years later and as i thought that everything was alright it came to my life again in bones this time. So one year now i take Ibrace & femara (among others pills).

You can not imagine how Happy I FEEL to found you.....

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CharaMasiakou profile image
CharaMasiakou
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20 Replies
Barbteeth profile image
Barbteeth

Hi Chara

Pleased to meet you although I wish it wasn’t on this site where we all have metastatic breast cancer

I’m like you I have it in my bones and take Ibrance and letrazole..managing on the drugs..my main problem is pain as I’ve had some fractures..that’s how I found out the cancer was back

I wish you sucywith your treatment

This site is blessed with wonderful ladies who are positive and will cheer you up as well as give good advice

Barb xx

CharaMasiakou profile image
CharaMasiakou in reply to Barbteeth

Hello Barb

Really nice to have your answer.

Pain was my main problem... Since after my radiotherapy I started Durogesic and I felt good. My main problem now is that panic attacks came to my life and I can not handle them... Is anyone else who has the same???

Wintervt profile image
Wintervt in reply to CharaMasiakou

Hi Chara,

You will find this group to be very supportive!

I have bone mets as well and I just finished up my fourth cycle of femara and Ibrance. My panic attacks wake me up at night. I’m planning to schedule an appointment with a counselor, as I internalize everything which is not healthy. How often do you have panic attacks? Did you have them prior to your diagnosis?

Sending ❤️

CharaMasiakou profile image
CharaMasiakou in reply to Wintervt

Hello sweetie!!

Panic attacks came to my life 1/2 year after my diagnosis of met. I didn't have them before. I do now phycologist counseling every week and feeling much better. For a long time at night I wake up and felt that I am going to die and I won't be able to go even to the hospital. But now I am much better. I started Xanax for a month

Barbteeth profile image
Barbteeth in reply to CharaMasiakou

Hi chara

I get theses horrible attacks of fear during the night..it’s always when I wake due to the hideous night sweats then I can’t get back to sleep

I really don’t know the answer..thank goodness it’s only about once a week

I’m thinking of getting some rescue remedy (Bach flower remedy)

I’ve used this before under different circumstances and it helped

Barb xx

CharaMasiakou profile image
CharaMasiakou in reply to Barbteeth

Barb

I did take rescue Bach flower about 3 months and it did not help me. Sorry for telling this. Xanax helped me a little bit but I don't want to have them in my life for long time.

If you dont please go to a phycologist ,this helped me a lot with panic attacks

mariootsi profile image
mariootsi in reply to CharaMasiakou

Chara, welcome. You couldn't have found a better site! Everyone here is wonderful and brave! I get panic attacks too. They come out of nowhere. Very hard to deal with. I try to breathe and pray and walk around when they hit! It's awful. But fear is our enemy. It saps our energy. We have to stay strong somehow. I now have a therapist who helps. Hang in there. People say it gets easier. I'm hoping that's true.

CharaMasiakou profile image
CharaMasiakou in reply to mariootsi

Mariootsi welcome to the club of panic attacks. I am trying music , dancing and audio books. These help me a lot!! I woke up in the middle of the night and listen music and walking all over the house. I am hoping that they going alway!!!

Try audio books

blms profile image
blms in reply to CharaMasiakou

where are you located? Look into cannabis for pain. Many women find the good CBD oi to be very helpful for pain. Some need the combo oil but it works in many ways. If legal in your area, check it out. I found the CBD from the pharmacy to be worthless but a high grade from terpenes one tiny drop is very good.

Teddielottie profile image
Teddielottie

Welcome ! I am in the UK ( where are you from ?) and was diagnosed one year ago , mine went straight to mets ( bones ) and I too have been on Ibrance / letrozole for 12 cycles . I didn’t have radiotherapy and so far I have not been on Zometa or Xgeva . I’m sure you will get lots of support from the lovely ladies on this site ! x

CharaMasiakou profile image
CharaMasiakou in reply to Teddielottie

Hello dear! I am from Greece, live in Athens. Expect letrozole and IBRANCE I have also X Gewa every month and Leurpol every 3 months 😉😉😉

Really tiring for me

blms profile image
blms in reply to CharaMasiakou

Oh i see now you live in Greece. I have no idea about cannabis there

blms profile image
blms in reply to CharaMasiakou

Chara, look into tapping on youtube for your panic attacks

PJBinMI profile image
PJBinMI

Hello, Chara! I'm glad you found us but sorry that you need to do that. First let me tell you that I have been living with metastatic breast cancer (extensive bone mets only) for over 14 1/2 years! When I was diagnosed, Ibrance was not available but I got nearly five years from Femara. I was also on Zometa, one of the bone drugs. When Femara stopped keeping the cancer under control, I switched to Faslodex, an injection that is generally given every 28 days. I got over 9 years from it. These hormonal treatments to control Estrogen often give us hot flashes and sweating. A good medicine to get that under control is long acting Effexor. Before I started Effexor, I would get hot flashes often--sometimes several times an hour! I would turn bright red and sweat would run down my face. On Effexor, occasionally (maybe 1 or 2 times a month) I would have what I called a warm surge--just a warming sensation without sweating. Effexor is an anti-depressant but it also counters the hot flashes and sweats from having no estrogen. Ask your oncologist about it. Some of us with estrogen receptor positive bc and only bone mets do really well for a long time! I hope you do as well as I have!

Hi Chara and welcome. You have come to a great support site - though of course we all wish we weren't here!

I have mets in my liver and seem to be going OK but like everyone else I keep hoping something will work for me.

This is a great site with lovely people so stay with us

Izzy

Hi Chara,

Καλώς όρισες!

This is a supportive place to find answers to your questions, or if you just want to rant.

I find it really helps to talk to other women who have metastatic breast cancer, as we understand what others are going through.

Take care,

Sophie x

CharaMasiakou profile image
CharaMasiakou in reply to

Dear Sophie

Nice to hear and see that you write Greek. Have you ever been in Greece?

Certain it's really helpful to speak with someone that has same problems, anxious, fears with you!!!

in reply to CharaMasiakou

Dear Chara,

I am British Greek-Cypriot. My parents came from Galini and Pendayia in Cyprus and settled in the UK in the 1960s. I have been to Cyprus three times to visit family over there. But I have never been to Greece.

Take care,

Sophie ❤

SeattleMom profile image
SeattleMom

Hello, Chara!

You have found a great group of wonderful, supportive fellow MBC fighters, with lots of recommendations and prayers, no matter what faces you.

Like you, I have been on Ibrance and femara for nearly a year, since I was first diagnosed with MBC. I had my BC diagnosis in 2000, and totally unaware that I had lingering cancer--which spread to my spine 17 years later. I had a double mastectomy when diagnosed with BC, with no sign of spread to nodes or surrounding breast tissue.

Like you, my recurrence was a shock and source of grief. But like you, I am also fighting this new "normal" and hopeful for the future. Stay strong! XXOO Linda

hdhonda profile image
hdhonda

Hello Chara and welcome. I have Mets to lungs and take Ibrance and letrozole. You will find a friend in all of us. I am 72 so I am probably older than your Mom. There are many treatments available. Again, a Hardy welcome. Hannah

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