Re: Treatment after Kadcyla?
 

A step forward.

At long last!

Got telephone call from Doctor's Secretary yesterday. Doc wants to do ablation on 3rd Oct

Guess where I'm spending my "big" birthday!
Geez!
Juls

Re: Treatment after Kadcyla?
 

Progress, YAY!!


Carol Ann

Re: Treatment after Kadcyla?
 

Well, even having the ablation on your birthday is still a great thing! What a battle you have had. I am honestly in awe of your toughness! You may be reserved, but I think you may have a bit of the "iron fist in the velvet glove" in you! Good luck with the procedure and I hope the pain will be minimal even though on the liver surface.

Re: Treatment after Kadcyla?
 

Carol Ann -

Thanks! Slow progress but good!

Laurel -

Thanks for your kind words. I first asked for this procedure over 5 years ago. Been a long time coming!

Juls

Re: Treatment after Kadcyla?
 

Ablation done yesterday.
So far so good!

Juls

Re: Treatment after Kadcyla?
 

And Happy Birthday to you too

Re: Treatment after Kadcyla?
 

YAY!! And Happy Birthday!


Carol Ann

Re: Treatment after Kadcyla?
 

Juls,
Happy Birthday!
Sending healthy vibes your way!
hugs,
Melissa

Re: Treatment after Kadcyla?
 

Thanks Becky, Carol Ann & Melissa,


Feel like I've been run over by a truck today!!


Juls

Re: Treatment after Kadcyla?
 

best wishes for everything!! nancy

Re: Treatment after Kadcyla?
 

Sending hugs and strength your way (and belated Happy Birthday!)

Re: Treatment after Kadcyla?
 

Thanks Nancy & Donna.


At hospital yesterday & all good after ablation.
My Bilirubin level has been an issue for months but in 1 week bilirubin level has gone down from 47 to 22.
Don't need to go back for 12 weeks!! Yeah!!

I asked again for Herceptin to be reinstated but told "no", to stay on aromasin with zometa. Going to continue stating I think I should still be on Herceptin.


Otherwise taking this as a win!

Juls

Re: Treatment after Kadcyla?
 

Hi Juls,
How have things been since the ablation? Any luck getting back on Herceptin?

Re: Treatment after Kadcyla?
 

How are you Juls?

Re: Treatment after Kadcyla?
 

Hi Unclaimed,

Thanks for asking. Haven't been on here for a while.
Going for Ct this week to check Ablation area etc. Had little pain from it but have had a bit of cramping.

Oncologist still saying Herceptin failed me. So on Aromasin and Zometa only.

How are you?

Juls

Re: Treatment after Kadcyla?
 

Hi Flori,


I've been better!!

Haven't been on site for a while.
Sciatica flared up just when ablation done. Got so bad I ended up at Emergency Dept. Still in discomfort and walking badly.

Due for CT's this week and a bit concerned. ( Really not happy being on Aromasin and Zometa only)





How are things with you? Glad that ZW25 keeping you stable.

Re: Treatment after Kadcyla?
 

Juls,
Sorry that you are not feeling well. Sciatic pain is horrible, I hope that you get pain managed and answers soon. Any chance of you joining a clinical trial?! Sending hugs and so much love <3

Re: Treatment after Kadcyla?
 

Hi All,

Just out of hospital. Turned out sciatic pain is either cancer cell or new bone met in pelvis near groin. In exact position that I've felt nerve on and off over Summer. Got worse 31st Oct. & went to GP, A& E, A & E Consultant & Onco over last 10 wks.. Been going ever since! Everyone checked the numerous ct's,mri & x rays done between April/May until mid Oct. Nothing seen! Textbook sciatica! Finally my Onc Nurse (along with new private) Physio got suspicious - but they wouldn't give me scan until 10th Jan.
Well all went pear shaped - scan showed bone involvement, liver involvement and enlarged lymph nodes at leg area. Immediately 5 fractions of rad over weekend. Been treated to prevent paralysis. ( That's a joke because everything they did made spine worse!)
Got home yesterday but foot weak so have foot strap, zimmer and walking stick. Physio to come to house!
Saw Oncologist yeterday and told her speak to me when a plan properly formed.
Looking at new trial with herceptin again but Bilirubin could be issue & I would end up missing to many cycles.


She is going to write and ask permission of Scottish Med Board to give me Herceptin regardless but thinks unlikely they will approve.

Asked for analysis report from previous trial - in hope there is something that might be helpful ( she knows nothing about it so has to contact Senior Trial Doc - so going to take time & then its a German Company that deals with it.


other option Chemo / hormonal.


Family not happy about wait but can't be helped.

Any thoughts appreciated!


Just remembered Docs other comment " Don't think you and CT's a good fit!" Might have to send you for MRI's in future!

The plus point was liver ablation vg ( but other problems appeared still to be confirmed)

Juls


Laurel - think that iron fist is well out the glove now!!

Re: Treatment after Kadcyla?
 

Oh Juls, so sorry about all of this. Hoping your doc comes up with a viable plan SOON and you aren't in too much pain. Glad you'll be getting physio. I don't have any thoughts about how to go forward but wanted to let you know I am here rooting for you.


Carol Ann

Re: Treatment after Kadcyla?
 

Juls;

I'm sorry but I don't know your pathology. Are you ER/PR+? If so do ask about Ibrance/Letrozole combination. I have posted on it here and it is used for her2- and Her2+ Given in pill form it is very easy to take. I am hoping this will be of help to you.

Cathy