I love being unique... Usually :-)
 

Hi my friends
I had my first scan post changing from carboplatin, perjeta and herceptin to abraxane, herceptin and perjeta this week. My scan results are a mixed bag and we don't know what is going on. The large lung masses have responded dramatically well (yeah for me) ...but there are nodules at the bottom on my lungs growing and lymph nodes growing - neck, mediastinum and probably armpit. I've felt the one in my neck for a couple of weeks - no pain but suspicious. I thought the tightness and tingling that I am experiencing in my left arm issue was surgery related but my oncologist can feel a node high in my armpit.
So... I am having a biopsy of the neck node on Thursday and an ultrasound of my armpit.
Could be I have two clones of cancer happening but usually seen in different organs not the same organ (I've bad mixed responses before but nothing so dramatic as how mixed this is),I could have sarcoidosis and cancer, could have lymphoma and breast cancer. Maybe it's viral... My onc and r
adiation onc are perplexed and Hubby thought she was very concerned.

My cough is not gone but vastly improved. My tumor markers continue to decline (140's to 86 in two cycles and still dropping)
Don't know what to make of it all. It seems I am very special!
I am going with how I feel and that is really good.
Does anyone have any similar experience or stories to share?
A xx

Re: I love being unique... Usually :-)
 

You are indeed very special Amanda! No wonder you are perplexed, but gee there is some very good news in there with your dramatic decrease in lung mets and the big drops in your TMs. Maybe there is more than the 'main event' happening, however, the good thing is now they can start to investigate that more closely and hopefully come up with some wonderful solutions for your 'special-ness'!

But I'm glad to hear you are feeling good and that your cough is improving.

You really do seem to have a wonderful team right behind you - because you are special! It will be good to get the biopsy results after Thursday to shed some more light.

As many say here, 'Keep The Faith'!

Cheers Marie

Re: I love being unique... Usually :-)
 

So glad to hear you are feeling good - that has to be getting mirrored internally somewhere......
What a mixed bag we will be interested to find out and then go on to attack mode again.
Good luck and I really hope your results lead to a magic bullet
Jenny xx

Re: I love being unique... Usually :-)
 

I thank God for the good news portion and pray you get answers soon.

- Penny

Re: I love being unique... Usually :-)
 

Amanda,
Yay, indeed! The shrinking lung mets...and the dropping TMs are GREAT news!! You must be so relieved! (I know I am!)

And, I agree...you are VERY special, in so many ways! Most of them totally unrelated to the big C!

I know exactly what you mean though...while being 'special' does draw extra attention and creative thinking on the part of your medical team...
being 'un-interesting, and normal' ... but NED would be much less "special"...
but waaaaaay better!!
Heck! I'd even take un-special and stable at this point!
How 'bout you?!

When all the info has been gathered...I'm confident that a new and "special" treatment will be found. One worthy of your brand of special-ness, I'm sure! :)

Keeping the faith right along with you!
Denise

Re: I love being unique... Usually :-)
 

Great news re the regressing large lung masses and lower tumour markers are usually encouraging. No experience to share here but certainly hope your team of doctors will cook up another unique cocktail for you soon:)

Re: I love being unique... Usually :-)
 

Glad you're feeling so well Amanda, my friend had lung cancer and was given two years, she's now six years out and was just told she's cancer free!!:) Holding good thoughts for you!

Re: I love being unique... Usually :-)
 

Amanda,
I would relish in your good news and not jump to any conclusions just yet about the other "stuff." Your TM are a good indication that something very good is going on, don't you think?
I had a liver biopsy yesterday. Let's compare notes at the end of the week, or early next week.
Glad to hear that you're doing well.
Love
Karen

Re: I love being unique... Usually :-)
 

Like you mentioned, I have known someone with two different cancers, but in different organs at the same time. Also had a chemo friend whose cancer became hormone receptor positive when it spread, and was only her2 positive to start out with. Lets hope it is just a virus. The good effect in the lung nodules is certainly something to celebrate, and the dropping tumor markers are also! That is definitely a sign you have some good work being done in your body. Sending lots of good juju your way and prayers your way. Please keep us updated. I think I have learned more from the posts on this site than I learned in an entire 15 years of typing hematology/oncology reports!

Re: I love being unique... Usually :-)
 

March on! Glad to hear the improvements.

Re: I love being unique... Usually :-)
 

Of course, you are wonderfully unique, Amanda. Wonder if that is an allowable qualification of the adjective?!!?
I've had worrisome symptoms from other areas (uterine), but these came to nothing. Sometimes I think the scans show far more than we need.....
Go with what you feel and enjoy the good times..... Pam

Re: I love being unique... Usually :-)
 

Maybe the mixed bag is just mixing your body up and it's just reacting differently, once they work out the kinks maybe all will be fine. I say lets go with that. Praying for great results.

Re: I love being unique... Usually :-)
 

You are always in my prayers Amanda. Peace my friend

Re: I love being unique... Usually :-)
 

Thank you all. I had core biopsy done today - they took 4 samples to ensure they had enough. They couldn't find anything troublesome in my axillary so arm issue is not node related (yeah - need to get exercising more). They have put a rush on my results as my onc is going on holidays for a week so may know more tomorrow.
I can feel all of the prayers and thoughts - thanks.
Btw - I still have quite a bit of hair - shedding but still not quite looking like a bag lady yet!
A xx

Re: I love being unique... Usually :-)
 

Good news Amanda! And more positive thoughts and prayers coming your way.
And of course, very glad to hear that you are not looking like a bag lady!
Cheers Marie x

Re: I love being unique... Usually :-)
 

Amanda...
Good new! Love it!

Gotta say though... bag ladies must be waaaay more attractive in 'Oz' than here in the states!! First off... you have far too many teeth! Just sayin'! :)

Stay strong! Prayers for more good news heading your way! ... coated in LOTS of love!
Denise

Re: I love being unique... Usually :-)
 

Goon news, Amanda, hope the biopsy results is good news also. Thinking of you
Dawn. Xxxx

Re: I love being unique... Usually :-)
 

Glad you are feeling 'very good'. Hope/pray it continues that way.

Sending you good vibes...

Re: I love being unique... Usually :-)
 

So….
results are in and it is all just more of the same - Her2 Pos breast cancer, hormone negative. It seems I have now started growing a particularly resistant form of the initial cancer that is resistant to the current treatment - so while one batch of tumours is responding dramatically, a new batch of smaller tumours in my lungs and lymph nodes continues to grow.

Implications for treatment - will wait until I see my regular oncologist on Tuesday. My gut is saying stay the course for another couple of cycles and scan again to see what these pesky spots are doing.
We have to find a way around the new resistance. What a pesky thing this is. My gut feelings were really good and the results could have been much worse and of course they could have been better.
Times like this I wish I lived in the US and had access to some phase 2 and 1 trials.

My initial response was - at least its not triple negative but I guess it doesn't matter much as there is no benefit to being Her2 positive if you are resistant to all of the targeted treatments. Hubby quite upset about it.

So I'm going with feeling improvement overall and then we will work out where to from here. I was hoping for useful information and yes, it is information that tells us something and nothing all at the same time.

pesky nodes and nodules be gone with you!
Axx

Re: I love being unique... Usually :-)
 

A mixed bag for you. Keeping positive thoughts and prayers that your current course of treatment will start addressing the new issues, or an addition to your plan can attack the new pests.

Keep us posted and know we are here for you and your husband, too.

Re: I love being unique... Usually :-)
 

Not exactly the news we wanted to hear, Amanda. Those pesky nodes and nodules have to learn to behave! Mixed results are hard, but I am glad you are still feeling well. We will all be waiting to hear what your oncologist says on Tuesday.
Best wishes..... Pam

Re: I love being unique... Usually :-)
 

Hi Amanda, I reckon go with your gut feeling and give a couple more cycles a go, and of course your regular onc may well have more information for you. I can't imagine how hard this must be on your hubby, and you too of course. It's the uncertainty that just doesn't help. I note your reference in your last paragraph to something or nothing telling us things - I recall another very strong woman in Australia this past week saying something similar.....
Thinking of you my friend,
Marie

Re: I love being unique... Usually :-)
 

Mixed bag results are always a puzzler. With the drop in tumor marker, you may have some scar or necrotic tissue in the scan. This is often the case.

What kind of scan? PET or CT? I missed that.

All the best for some better, less puzzling results on the next scan. It is hard for busy moms to get the rest they need that allows their body to recoup from the treatments, so hopefully you are getting some good deep sleep at night.

Re: I love being unique... Usually :-)
 

Amanda,
I'm with you...the news could have been much worse...
But criminy! Aren't you due for some "best news anyone's ever had"!?! Where is the justice in this world?! I will definitely be expressing my displeasure when God and I discuss this!

I have to say though, I'm impressed with your 'I can do this' attitude! Of course, you have extraordinarily good reasons to fight like hell and beat this...again...your wonderful hubby and beautiful kids! But still...kudos for not letting disappointing news drag you down.

And, if my opinion matters at all...if it doesn't, don't tell me...I'll be crushed :) ...anyway, if my opinion matters:

a) I wish you lived in the US too! But I just want you closer! Then I might actually get to hug you in person someday!

b) I really, truly believe that you and your treatment team will find the combo that kills those pesky new tumors too!

Stay strong! Keep believing in the cure...because it's out there!
Sending love and prayers...
Denise

Re: I love being unique... Usually :-)
 

Amanda, I've been following your posts and updates and I, too, had FEC and taxane (three of each). My prayers are going FedEx to Australia!! I wish you shrinkage and pray for good news on your next posts.
xoxoxoxoxoxxoxox
nora

Re: I love being unique... Usually :-)
 

"pesky nodes and nodules be gone" is my new mantra. I have no doubt you and your team will figure out the best course of treatment for you.
All The Best.
Leah

Re: I love being unique... Usually :-)
 

Yes, be gone!

Dawn. Xx

Re: I love being unique... Usually :-)
 

Im sorry you didnt get the results you were hoping for. ((hugs)) I think you should always follow your gut instinct. You know your body better than anyone else, and if you are feeling better overall that is a good sign. Im sure sending you lots of prayers.

Re: I love being unique... Usually :-)
 

So the plan so far is keep going with what I am doing - It seems about 70% of the disease is responding so we will keep going. My Onc is still consulting with others but we are considering adding Avastin to the current triplet.
Next week is a week off - woohoo! I am still feeling pretty good.

Re: I love being unique... Usually :-)
 

Glad you are feeling well, Amanda. At least there has been some good response; perhaps the remainder is slow to learn? Enjoy next week and let us know about the Avastin.
Best wishes..... Pam

Re: I love being unique... Usually :-)
 

Also glad to hear you are feeling well Amanda.... Let's hope that 70% moves up to 100% real soon with Avastin added into the cocktail. Enjoy your week off!
Cheers Marie

Re: I love being unique... Usually :-)
 

Amanda,
I just finished a course of Avastin. It didn't have any side effects at all for me. And it seemed to do what it was supposed to do.
I hope the new cocktail is easy on YOU but reeeeaaaally hard on those mets!
Always praying for you!
Denise