Monsters under the bed: So after 2 and... - SHARE Metastatic ...

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Monsters under the bed

SoulJourney profile image
24 Replies

So after 2 and a half years my Ibrance and Fulvestrant Combo has failed. When I started I was the 11th person in my province to start that combination. The doctor was skeptical and we would call it a success if I could get 6 good months. well I got 5 times that.

I have 5 weeks off to recoup a treatment fatigued body and prep for the next go - but then I had an overnight visit to the ER last week with back pain so bad I couldn't walk. I am now home walking and working through the pain don't feel like I am strengthen or steeling myself for the next battle.

I get my port on Monday. I have full scans on Tuesday then what chemo will be decided on the 30th. Likely AC.

I am great in the day strong, focused and preparing but at night boy does my imagination and fears take over. Last night I read Psalms till I fell asleep.

The unknown scares me way more than the know. And then its October...

I am not fond of all the October clichés but I decided if this is war then I was drafted - I didn't choose to fight I was forced to face cancer and fight it!

Thought I would share a little dark humor I dumped in my stress this week when I heard some say something about save the tatas - I turned around and asked "In November are you going to have a save the Dicks campaign for prostrate cancer"

I want someone to be ready to save me not my boobs!

I knew you ladies would get it!! Stressed and filter free

Tammie

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SoulJourney
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24 Replies
blms profile image
blms

Im guess low dose taxol.

blms profile image
blms

If the cancer has spread to liver. Did you originally have A/C? they will to give you that again.

blms profile image
blms

Back pain on right side can very well be liver nerve pain. I had a lot of it up under my shoulder blade and over toward my spine. it was miserable--now gone for many months. Where was your back pain?

SoulJourney profile image
SoulJourney

HiThe pain has been mostly but not limited to the left side - I have had 2 high dose radiation treatments to my left ribs. Right after my initial mastectomy and reconstruction I was in for a T12 vertebrectomy and fusion. That was followed by 8 weeks of radiation to my T12 and area. It was never clear but considered stable for 7 years. I have some 35 spots down my spine last count plus skull, hips, shoulders, sternum. It is an inside joke with my sisters that I am swiss cheese, it really has helped me not make too big a deal over it.

I have had a little pain under the right shoulder blade but my liver has been considered NED for 5-6 years now.

Huge blessing, when I got home from appointments Amazon had delivered my back brace. It has helped so much and less pain is definitely going to mean a better sleep and a better perspective in the morning!

I have been actually called Pollyanna but not today - good thing there is a new day tomorrow.

Thank you so much for listening! Getting it out just changes everything and makes room for the positive energy to come back.

Glad I have you all here

Tammie

💜

8576 profile image
8576 in reply to SoulJourney

Hi Tammie. You have found a good place to come to for support. My nickname is Pollyanna too! Not a bad thing. Means you are a positive person. That will stand you in a good position on this journey. Wishing you well and there are lots of treatment options so don't despair

Cheers, June S..

Red1246 profile image
Red1246

Hi Tammie,I’m so sorry you have progression but there are so many other med combinations available now, I’m thinking one of them will do what’s necessary.

Will keep you in my thoughts and hope to hear after 9/30 what’s been decided re next treatment. In the meantime, don’t lose your sense of humor. So important. 🙏🏻❤️Kathleen

😂 save the dicks November, tickled me.What a bad Halloween trip you are having. Getting all the anxiety out of the system is all part of this journey, and makes you ready for the next part of it.

I do hope your pain settles as that wares you down.

Take care and good luck

Clare

Joannaaaa profile image
Joannaaaa

Sending good wishes and hugs your way x

Georgiamjb profile image
Georgiamjb

I’m sorry to hear about your pain and hope the new treatment will go well and be effective! I feel the same about October and laughed out loud at your joke.

NPmary profile image
NPmary

Go Sistah! ❤🤣❤

pollymacchili profile image
pollymacchili

Sorry to hear your story's current Chapter. But you made me laugh out loud! Hilarious idea for an awareness campaign for guys! Thank you for that! I have met your under-bed monsters..I call them the "scaries". I am a children's lit fan, so when they appear, I drag out Where The Wild Things Are by Maurice Sendak...you might try it...as good as Psalms, perhaps.

Wishing you positive strength and yes rest your weary body. We all need to step back at times and think again.I never say I’m going to fight this bast*** thing. I always say I’m living with it. Somehow it works for me.

I’ve recently had a change in meds as Ibrance and Letrozole stopped working. I have had problems tolerating it but hopefully it’s sorted now. We have to move on. Whatever is thrown at us we deal with it……eventually.

I have awful sleepless nights but I’m retired so can catch up during the day. I am retired thank goodness. I grow veg and fruit. I also have a great interest in plants so I just read books on them during my sleepless times.

Take care and I hope your new treatment will help you.

Best wishes

Totheriver profile image
Totheriver

So sorry that you are facing progression Tammie, hope they will find a good treatment which is not too harsh💕

mariootsi profile image
mariootsi

Tammie I wish you the best with your treatment.

SusieIM profile image
SusieIM

You bet we get it, I am so sorry too. Yes, stay positive and strong, sending hugs. Keep us posted.

Melpub profile image
Melpub

There's often no harm in saving both, statistically speaking --you may well be able to save yourself and save your boobs. Sounds like you are doing everything right. When in doubt, consult another university hospital.

SoulJourney profile image
SoulJourney in reply to Melpub

I was venting - it frustrates me that October seems to be about saving our breasts - November is about saving Dads!October should be about saving Mothers, Daughters, sisters and girlfriends - even the guys effected! We know how check and screen and save our breasts - time to get beyond awareness and help people see breast cancer isn't cured! Which I have also heard -some 50% reoccur metastatic, some of us are drafted metastatic right out of the gate. There is a lot, I mean really a lot, of misinformation out there!

That's what was eating at me - I losing another option and it is failing heading into October. I really wanted to do more to change the conversation. I still might be able to. I am considering throwing a head shaving party on Canadian Thanksgiving - that's in 2 weekends.

I will probably video it. Way back my boys and husband vowed to go bald with me. We have come up to the chemo door 5 times but have never had to step through, there has always been an alternative.

I have been on Tamoxifen, Anastrozole/Letrozole, Exemestane, Xeloda, Ibrance with Fulvestrant. Further I have had a mastectomy and reconstruction, major back surgery, my ovaries removed and Radiation multiple times to multiple places. I want Adria to be the chemo that reboots me so I can go back and retry some of the drugs that have previously failed.

I have my middle son's wedding in May and I am thinking an engagement is around the corner for my oldest.

I know 7 years is a good run but I will not go quietly into the night!

jersey-jazz profile image
jersey-jazz in reply to SoulJourney

Dear SoulJourney-------You are a treasure! You made so many of us laugh aloud. Your turn of phrase is so clever but mostly, your Pollyanna syndrome is coming through, loudly and clearly.This is sour grapes but it is too late anyway to save most of our boobs. Their lost is small potatoes compared to the rest of the cut up that has followed. ---XXX OOO

mudakurag profile image
mudakurag

So understand all of what you said!I am with you on this journey sending positive healing thoughts for you and all of us.

michelangelina profile image
michelangelina

So sorry to hear about the progression--will remember you in my prayers. I am not fond of breast cancer awareness month either. Your joke made me smile! Wishing you strength, and peace.

Staysha profile image
Staysha

You had such a great run on your ibrance treatment. Here’s to 5 times the min on your next. Also I just have to tell you... I know you were venting at the time but I purely bursted out laughing at your November comment! Hilarious girl! I’m with you on that way of thinking too!

Stacy

SoulJourney profile image
SoulJourney

Hi Everyone - I wanted to say thank you sooooooooooooo much - feeling loved. You all helped slay the monster under the bed 😘

Tammie

RLN-overcomer profile image
RLN-overcomer

Sister/warrior Rest up ,and then get up, and continue the fight to be here with your loved ones. I pray GOD will provide the right treatment(s) as, we hope /pray for NED, stability, or complete remission. Amen🙏😇

Missmaddie615 profile image
Missmaddie615

Sorry to hear of your progression and pain. Hoping the pain will subside quickly! Keep on reading Psalms -may God bless you and guide your doctors to the best course of treatment for you! 🙏p.s. thanks for the giggle about the month of November!😉

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