Unwelcome Guest

Kandy

So, as you already know, we are all celebrating big time here over the birth of Harper. Well, I seem to be getting a very unwelcome guest to my party. Got the call this morning. Two new spots. One on right pelvis, one on femur. Like I haven't had enough trouble with my left pelvis, now we are switching sides. Now honestly, I could have done without this guest arriving. Why does it want to rain on my parade? Not sure yet what my new plan will be. My radiation oncologist was going to speak with my medical oncologist to come up with a plan. This is the first progression since stage 4. Not feeling too good about it. Like everything in my life is so perfect right now for this to show up. Once again, prayers please. I really want time with Harper. So sad today. Live in the moment ladies. Best to all of you.

50sgirl

Kandy, I am so sorry to hear about your unwelcome guest. I know how you feel. My unwelcome visitor decided that the bones, where all his pals live, just weren't good enough for him, and he recently became a squatter in my liver. Doesn't he know that I had planned to be a super-responder? I was going to stay on Arimidex for five years. Oh, and the liver? Hey, I have been very good to that liver, and it betrayed me.

I wish you could have been spared this news. You have been through so much already. There is no explanation for why these things happen. There is no sense going the "maybe I should have" or "maybe if I hadn't done" or "what if they had" route. The past is the past, and I firmly believe that we are in no way responsible for the downturns in our condition. No one deserves to receive the news you received. Researchers still have so much to learn. In the meantime, we go with the best treatment plans available, and move forward. I know this is a huge shock to you. I hope that you feel better once you have a treatment plan in place. I also hope that the new treatment plan blows away that unwelcome visitor and that he is replaced with that NED guy that I have heard so much about.

Allow yourself time to feel sad, as you do now. Get angry. Have a pity party if it helps. It is all part of the process. Don't feel that you have to put on a happy face if you don't feel it inside. When you are ready, pick yourself up and get on with life. Remember that you are strong. You have a wonderful family to be there with you. You also have all of us ready to step in and hold you up. You will get through this

You have your wonderful grandson whose birth and life you can continue to celebrate. I think you will be around for many years to see him grow.

I will definitely pray for you. I hope we can give you the support and strength you need.

Hugs from,

Lynne

Kandy

Thank you Lynn. Such a sweet response. It seems like I can't get over one thing before getting more bad news. I think it's determined for me not to walk. I just have got where I can get around pretty good from that massive surgery. It is such a sad day. I hate you also are experiencing unwelcome guest. I thought about putting a sign out stating no visitors allowed. But I don't think these idiots can read. I do hope your treatment plan kicks them out. Best wishes to you.

zarovka

The hardest thing is to keep going through the treatments, the decisions, the waiting. Harper will keep you going, so that's half the battle right there.

You've been pretty lightly treated. You have a few very good options. It may be as simple as adding Xgeva or Zometa.

Once you have a plan, you quickly get your life back. The waiting is a tough. Make sure Harper gets lots of attention ...

>Z<

NineTwelve

So sorry you're going through this. I had my first progression last month. It was such a shock. I am rededicating my diet efforts (plant-based), being more diligent about exercise, went back to my acupuncturist, and backed off from some of my social and family obligations. I'm still there for them, but not at the expense of my self-care. I was so discouraged for a while. But then I got up and got myself back in the game. We're not done yet!

You've been doing well for some time - that means your system knows how to fight this. Your next tx will kick those progressions to the curb.

ABeautifulSunset

Nooo !!! What a way to rain on your moment ! So frickin' unfair. I'm so mad. I mean really... Aaaaaah!!!!!!

All of that said, my first (and only so far) progression after stage 4 NED last year really threw me for a loop. But besides switching treatment, it didn't change my life much. I hope this is true for you as well. You'll get it in check and move on with that handsome grandson of yours.

But jeeez, talk about timing.

DivineMrsM

Kandy, I am sorry to learn of the progression, especially in the midst of welcoming your new grandson into the world. It is scary at the moment and horrible timing, but as Stefajoy mentions, hopefully you switch to a different treatment and that beats this crap back for another long stretch of stability. Many hugs and prayers for you

pajim

Bah, humbug!

But seriously, if the spots are small, maybe you don't need to switch treatments right away. Or maybe you can add Ibrance (as I did). We stalled for a year before adding it.

You'll still be able to carry your grandson for many years to come.

Kandy

Pajim, they are small. One is 16mm, the other is 8 mm. My tumor markers have skyrocketed though. They have so far held true to what is happening. They went from 30 in March to 266. They are concerned that there are multiple places but too small to show on imagining. That part really scares me.

Thank you all for helping to hold me up when I'm down. Wishing you all the best.

Zillsnot4me

ahh Kandy. I'm so sorry. Just concentrate on Harper and let your MO figure out a plan. Ibrance has been good to a bunch of us.

I know it takes time to absorb a new dx but you have a baby to smell. Enjoy him as much as you can. We will be here to rejoice and commiserate.

artistatheart

Oh Kandy, Jeez...Like Stephajoy this just ticked me off! The stupid guest does not even give you some time to revel in Harper's arrival for awhile. But as everyone else here says, you have proven to be strong and you have a lot of fight in there. We are all pulling for you and the next move to kick that visitors butt!

Heidihill

Sending prayers for unwelcome guests to be evicted and for your undiluted joy to return.

Lynnwood1960

Hugs Kandy! I have no words to make you feel better, but know that we care and are praying for you

susan_02143

Kandy,

Do you feel like a ping pong ball yet? I bet you have emotional whiplash. Enjoy Harper..... he will be your best medicine, well, except for the real medicine. When do you meet with your team?

*susan*

AmyQ

Kandy,

It was the best of times, it was the worst of times...pretty well sums up your situation. Celebrate Harper and don't let the interloper overshadow ALL your joy. I'm certain you'll get this back in check once there's a new treatment plan, but yea you're right...why dump now? A cruel trick, for sure.

I was reading about a support group whose longest member was still thriving with multiple bone mets for 18 years...this can be you, me, the next BCO member who weighs in...enough time to see Harper graduate high school and head off to destinations unknown. Enough time to meet new precious grandchildren you haven't even imagined yet.

I'm sorry for the bump, but I promise you will have a much improved attitude once we have a new plan in place but for now...get angry, throw things, yell and scream then pick up Harper, snuggle him, smell him and love him. THAT is the best medicine of all.

Amy

Kandy

Thank you all for your support, awesome group of ladies. I am definitely on an emotional roller coaster for sure. My radiation oncologist was going to meet with my medical oncologist to come up with a plan. I still haven't heard back from them. It does make me angry, timing stinks. But I guess cancer wanted me to know it is still there. Amy, I do hope for all of us to have many more years with our family and friends. I wish the best to all of you.

Kandy

I heard from my radiation oncologist today. They decided on doing SBRT on my new two guest. I'm hoping this can put me back to living with the NED guy. I liked him while he was with me. I go on Friday for planning and treatment. Wishing you all the best.

zarovka

SBRT is interesting because it can trigger an immune response. IOW if they treat the tumor that they see, the immune response that follows may take care of the rest that you can't see. My friend had a response like that to SBRT.

Here is an article that looks at combining SBRT and immunotherapy.

Main point: there is possibly a major upside to SBRT.

What does Harper have to say about all this?

>Z<

exbrnxgrl

Kandy,

Well, this stinks! Focus on that beautiful baby, and have faith that your docs will come up with a good tx plan. Thinking of you.

Kandy

Zarovka, thanks for sharing that article. I had this done on my right ileum, almost 3 years ago. This is the first progression since then. I sure hope there is an immune response. That would be awesome. Harper says he just wants his Mimi well. I am so in love with him.

exbrnxgrl

I think we were posting at the same time!' I totally understand how you love that baby boy and he will be some of the best medicine in the world. My dd and baby Miles stopped by my classroom today and it spread happiness to everyone who saw him. Harper will be the light of your life and see you through any tough times ahead

zarovka

Kandy - I expect Harper will get what he wants. When you watch Harper graduate from high school you will look back and realize he arrived just in time to get you through this.

>Z<

jensgotthis

I'm so sorry about your progression and wish you every best outcome with your upcoming treatment

Fitztwins

Progression is hard. But this is your first one in 3 years? and its just 2 small spots not causing any issues. I know you want stable, or NED, but in my 8 years with mets, this would be an OK scan. small. manageable, not causing harm. My doc would maybe switch a hormonal or watch and wait, or like you said, zap them mothers.

I like the term FEAR, Face Embrace and Recover. Onward and Upward. This is not an easy road, and our scans can be a huge disappointment. Plans on watching that baby grow. You have responded great so far.

congrats on the grand baby!

steelrose

Ahh, Kandy, I just saw this (insert expletive!). Unwelcome guest for sure! But just look at beautiful baby Harper and I know you will draw enormous strength! The good outweighs the bad... plan on being around for your little guy for years to come!

XO

Rose.

RonnieKay

Kandy....WOOHOO MIMI...the title that you've waited for!!! I missed Harper's arrival info...I'll scour your posts for that...but I can feel the love!!!

And crap! I like Fitz's FEAR description! You've definitely had to recover from some major gifts this unwelcome guest has heaped on you...time to put that sign out...no gifts necessary!!! (bc gives us great analogies). Anyhoo...I like the fact that they've caught these small buggers. My TMs are like yours...they tell a pretty clear story, and I wait, every 6 weeks, with a bit of anxiety (we all know what "a bit" means) to get markers. So happy you've got a plan quickly in place & ready to hear that it's working! This go-around, you'll have something that will help take the focus off stupid C...every day will be new and exciting with A GRANDBABY!!! Hugs to you & cuddly Harper!

Kandy

Thank you all for all of the support. Fitz, I love your analogy. Harper has made a huge difference in my attitude. Before, I would worry myself to death. Now, I say, let me just go hold the baby. Life is so good right now with the exception of cancer. I do wish it would leave me alone for awhile. My radiation oncologist is very aggressive. He believes in getting it out of there as quickly as possible. RonnieKay, nice to see you post. Been missing you. Hope all is well. To the rest of you ladies, wishing you the best.

AmyJM

Kandy,

So sorry to hear of your progression. I changed treatment for the first time this summer (not sure if you'd call it progression, but what is there got more active again, so my onc decided it was time to move on to the next tx), so I know how discouraging the first time can be. I'm glad they caught those new, unwanted guests of yours when they are small and hope that zapping them takes care of them and any unseen ones that may be lurking! Enjoy Harper! Grandchildren are such a joy! Our little guy is two now, and such a blessing! He is so much fun and melts our hearts. Enjoy all those cuddles and special moments.

Love and hugs, Amy

exbrnxgrl

Kandy,

Great way to look st it! Every kiss, every cuddle, ever quiet moment with that little boy sleeping in your arms is powerful medicine. You go, Mimi!

GatorGal

Kandy,

Harper came along just in time. He's the best medicine you could ask for! I can't find your announcement thread? Where is it hiding?? Glad your doctors already have a plan! My pain is a lot less so I guess they were telling the truth when they told me the radiation works even after they finish. I scan on sept. 1 and will be anxious for results. Enjoy every minute with Harper that you can. He sounds luscious!!

AmyQ

Amy,Sorry you had to switch gears with a new treatment plan...I hope it's just what's needed to get you stable again.

Kandy, I've go six grandchildren, ages 7 to 2 and wow, no one can adequately prepare you for the complete and undivided love. I hope baby Harper is the distraction you need from your unwelcome guest.

Amy