Lucky streak didn't extend to me :-( - Page 2

dawny · 07-11-2012, 04:53 PM

Good luck with your PET today Amanda, thinking of you.
Dawn

Mandamoo · 07-12-2012, 03:02 PM

Thanks everyone.
I had my PET yesterday and while I don't have the full report I spoke with one of the radiologists last night (very good friend of mine). The lungs did light up and possibly a very small chest node.(5mm) comparison to my CT has not been done yet. Everywhere else is completely clear. He believes 4-5 are biopsy able though it will again be tough. None are close to the lung wall or get table via bronchoscope.
So, I am waiting today to hear from my oncologist snd expect I will attempt a needle biopsy again next week. I am very keen to get tissue as these lung mets have never responded in a way that anyone expected. I hope to God that they are not triple negative.

Thanks for all the input. I am thinking of discussing adding herceptin back in - I will need to fund either the tykerb or herceptin (tykerb will cost less but still more than $200 a day) as in Australia the government subsidies drugs not private insurance and this combination is not funded and given withdrawal of the FDA quest for this combo by GSK - unlikely to be for some time.

I also don't think I will qualify for the theresa trial as none of the tumors are 2cm.

Istill feel really good so I am going with that and trying to maintain the faith.

Redwolf8812 · 07-12-2012, 04:55 PM

Thanks for keeping us updated, Amanda. So it's only in the lungs right now? The skin met and axilla node are clear? If so, it seems as though you and I may have something in common. My breast, skin, and axillary nodes responded completely to treatment, but the cancer still decided to take up residence in my liver, so I guess I had a mixed response to herceptin. Tykerb did nothing for me and I developed a severe allergic reaction to it. Have you been tested for brca? Platinum chemos seem to work the best on brca-positive patients.

When it was found in my liver, I had to wait a while for the her2 results and I also prayed it wasn't triple negative. From what I've read, the odds seem are that if it changes, it usually changes from negative to positive, so keep that faith of yours. God is good - mine was still positive. Yours is too.

They'll find the right cocktail for all of us, including you. But the rollercoaster ride stinks. Wish we could all get off of it.

- Penny

KDR · 07-12-2012, 05:04 PM

Amanda,
Always relaying your thoughts with grace.
I know you and your doctor will come up with the right combination for you. I am sorry you have the additional burden of governmental blocks. You are a very special woman and I see nothing but good for you.
Love
Karen

yanyan · 07-12-2012, 10:31 PM

Dear Amanda i hope you will find light through this tunnel and I pray you will.

Bunty · 07-13-2012, 01:07 AM

Hi Amanda, sending you big hugs, and a reminder that you have so many more options yet to explore.
Love Marie

Pray · 07-22-2012, 09:17 PM

Amanda, My thoughts and prayers are with you. I pray all will go well with your treatments!

phil · 07-23-2012, 07:47 AM

Your cancer has progressed on a taxane, and tykerb ?Like Lorraines had. Now that T DM-1 approval is within " sight ", 6 months ?, I am encouraging "Late " Stage IV pts ( multiple re-occ's, progression on taxane/tyk. ), to give compassionate use a try.
Gen. will soon turn in final data from EMILIA , then its up to FDA in this country. Gen. seems more open to comp use requests as they have finished trial FDA forced on them.
I dont know if things could work similarly in Austr., w/ comp use ? Gen pays for drug, but ins has to pay for other expenses, labs, scans etc.

Mandamoo · 07-26-2012, 04:28 AM

Phil I have applied for Compassionate access - apparently it is a global thing. I will know by Monday if I have approval. Apparently so far there has only been one request here and it was denied so I am unsure of my chances but hopeful.

Ellie F · 07-26-2012, 06:15 AM

Hi Amanda
I will be keeping everything crossed so that you get this soon. I have not heard of anyone yet getting this in England apart from in trials.i wondered if this was because its not licensed here at present.
Hope yours will be the request they grant
Ellie

phil · 07-26-2012, 07:13 AM

Good luck, over here everythings gotten so political w/ This FDA , and their agenda to punish pharma for supposed past transgressions. We end up being punished . I see a lot of that FDA craziness in the T DM-1 approval process. Waiting for approval based on EMILIA was pushed on the co. by the FDA . Theresa seems like a trial that , at least partly, aimed at enrolling more pts, getting the drug to more pts, in response to This FDA 's crazy rejection of t dm-1. have you ever heard of a randomization where 2 out of 3 get the better drug, t dm-1 ? its usually 50/ 50. Marianne , other trials testing combos like pert., - let them test them on folks w/ first re-occ's. You Late Stage IV people have suffered enough.
Over here we continue to fight to have This FDA thoroughly investigated. We also want the comp use process overhauled, w/ an FDA that works for us. Pushing co's : If you think your drug is good enough to be considered for acc. approval, then its good enough to give Late Stage IV's thru comp use. When our youtube video from our June protest comes out , you will see plenty of signs for FDA reform, but also a few purposely stating " Genentech : Where's the Compassion ? ", " Roche Holding AG : Is This Personalized Health Care ? ". They gave no comp use last yr, we have heard they are more flexible lately. About Time , Lets See It ! If you are Late Stage IV , reoccurences plural, high over expr of her2, progressed on a taxane , tykerb, We think you deserve Compassionate Use ! These Co.s , Researchers, FDA, cannot do their research w/ out YOUR Tremendous Stage IV SACRIFICE ! Speak Up ! Get your fam, friends to call your reps, and your mainstream , big advocacy grps. Speak up for Stage IV Rights ! Darlene Gant did, and got comp use for pert !

Mandamoo · 07-26-2012, 07:16 PM

Ellie - my onc had not heard either - I don't think Roche advertise it but I am led to believe the program is global and all decisions made centrally in Basel.

Phil - I am not completely up with what goes on with the FDA but in Australia we tend to follow pretty quickly. Our issue is that the government subsidies the drugs not private insurers so the supply can be severely restricted with few options to access outside funding personally once TGA approval is granted. We also get very few trials despite being a developed nation with a good healthcare system. I guess we are considered too far away but we get cancer too. I am so grateful for sites like this one where I can access wonderful information.

chrislmelb · 07-27-2012, 02:04 AM

Hi Mandy, I am not sure if it is still on trial here. I know it was on trial at Peter Mac so is it worth consulting with them to get onto it? I am off there for a second opinion next month. What are your oncs plans otherwise?

Mandamoo · 07-27-2012, 02:28 AM

Hi Chris
I am not eligible for the Peter Mac trial as it is a first line trial.
I possibly qualify for the Teresa trial which is at Frankston Private. I will pursue this if my compassionate request gets declined. If I was to be accepted and draw control arm (physician's choice) we are thinking either Herceptin Tykerb combination or Herceptin Abraxane.
Who are you getting a second opinion from?
You see Rick don't you?

chrislmelb · 07-27-2012, 03:17 AM

I'll PM you.

phil · 07-27-2012, 06:33 AM

Good luck Amanda w/ comp use ! Hopefully in future the approval system world -wide will be more flexible for late stage IV pts. more pt involvement in decision -making. I hear lots of good ideas from people about improving access. Thinking of Australia, here some cancer advocates are trying to address the lack of trials in rural states thru legislative measures to attract pharm co's to do their trials there. I'm not up on details but ideas include offering laws requiring ins to cover total costs of later phase trials, etc. So we always hope for a better future !