Not good news..
 

I asked to move the scan foward in the trial because my breathing & caughing is getting worse and lacking of energy..a lot.

anyhow wednesday i was told that there is a 17% increase and basically I am still in the trial because recist is saying 20% is progression.. but looking for another one before my health deteriorate further and i cannot enter any criteria.

But not good so here i am looking for clinical trial again and wondering what is it all for. I dont think i'll never be able to go on a trip again and the weather is awful here and in the minus (celsuis) so not even enjoying my walk with the dog.. I so know I am not the only one but I so not deserved that life.. i went at a diner with friends tonight and everyone was beaming with health, talking about their babies and future plans and their problems seemed wonderful to me. We played a game and unknown to them I was finding it so energy demanding that it was hard to enjoy it.

Anyhow I am holding on to the January feeling I had where when after a few weeks after starting the trial I felt so much more energy so quickly and could enjoy a great new year eve..

on the road again..

Re: Not good news..
 

I read your post and was so saddened by it. Please stay strong and try to be positive. You're in my prayers.

Re: Not good news..
 

Oh FOB, I was just reminding myself of your journey in your signature and at the very end you have the words of the Dalai Lama which are important to all of us....

I hope you can find another trial suitable for you, but also that you see some improvements on this current one.

You can always speak your peace here at this safe place..... We get it.....

Marie x

Re: Not good news..
 

Wishing you peace, serenity and much luck in your quest for the next solution, FOB.

all the best
caya

Re: Not good news..
 

Oh FOB I so wish this trial had worked longer for you. The weather is terrible over there but I did a 10 day look ahead and it is going to brighten up soon so so will your spirits I hope! Not long and you can enjoy walking your dog again.
I sincerely hope you find another trial soon.
Chin Up
Jenny xx

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I'm so sorry to hear this news. Praying for better days soon.

- Penny

Re: Not good news..
 

I'm sorry about this news, FullofBeans. ((Hugs))

Are you and your dear dog heading anywhere in particular on this trip or just exploring wherever?

Wishing you the best and just prayed for ya,

Paula

Re: Not good news..
 

FOB,
Reading your post I can hear your exhaustion and feel your disappointment.
Isn't is so true, that once you have been dx. with bc and you hear the usually everyday issues of others, you know they don't realize that they do not have serious problems.
It isn't easy to hear the silly complaints when fighting so hard. For myself, often times during the week I will have to endure the worthless complaints that really are not important at all (compared to the reality) of a women fighting her way to NED.

I am deeply sorry to hear that you are at 17% but remain strong as you are not out of the trail. It is wise of you to seek alternatives and as you already know when pushing open doors, light will come through.
I realize it is a difficult time for you, but please know many of your sisters are here and supporting you.

Now, as far as that stinky weather, being a dog lover like you, if you can't walk your little darling, then just hold her/or / him and snuggle. The sun will shine on both of you.

Many hugs being sent.
Jean

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Hi Fob
I am really upset to hear your news. The weather is terrible and we're snowed in here. I sincerely hope you find another trial here in England. As I have said before if one should be available in my part of the country you would be very welcome to stay with me ( hopefully snow will be gone by then)!
Ellie

Re: Not good news..
 

Hello,
sorry to hear all this and the awful weather and insensitive friends leading their normal lives doesn't help. Do inhalers help your breathing??? Radiation created fibrosis in one lung and inhalers helped me a lot. Your dog looks adorable.
I'm in the south of France, near Cannes and all it's doing here is raining, in fact we wonder if there will ever be another sunny day.
Watch some good movies and get some second opinions and hopefully someone on the site will have some good suggestions.
You'll get back into the fight - it's a big drag and exhausting and upsetting to have set backs but you are courageous and strong.
big hugs and love
sarah

Re: Not good news..
 

Oh, FOB...
I can read the weariness in every word. It's all so unfair. Cancer sucks doesn't even scratch the surface.

Please try to feel all the prayers and love we're sending...I know in a very real way, we fight the physical/medical fight on our own...but I know for me anyway, the support here helps me so much, mentally and emotionally. I hope we can help you that way too.

And, I'm sorry your friends aren't a little more sensitive to what you're dealing with. Until someone has walked this lousy road...they just can't understand how relentless this struggle is. It's not their fault...but that doesn't make it any easier for us.

Hoping and praying for...
nicer, cheerier weather ahead...
NO MORE PROGRESSION!!...
a relief from some of your symptoms...
peace...less weariness...and...
lots of puppy kisses!

I'll be thinking of you LOTS in the days ahead
Denise

Re: Not good news..
 

FOB,

I was trying to check prior posts to see what you have and haven't tried. Can you make us a list of treatments that you have progressed on. (+6*Taxotere; 3*TACE; LITT). I see you did six treatments of Taxotere. What did you receive with the 3 TACE; LITT? Something seemed to really slow it down after the FEC, Taxotere, TACE, LITT & vaccine combinations.

I looked at your signature, I don't see Perjeta.

Also have you tested for the BRCA 1 & 2, or BART genetics? We might need to think outside the Her2 box.

I'm happy to scour the internet for new ideas. I have some energy that I'd be happy to share with you. I see you are in the UK. Alright, a bit more challenging for me since I am in the American health system. Still . . . I'm going to look for ideas.

Re: Not good news..
 

Thank you all for the replies. By the way I do not think that my friends are insensitive they are just living a normal life, we are not at a diner party to feel sorry about me, no thanks I would not want it any other way it's just that I am the one who fell of the wagon. I used to know of people that did fell of the wagon and now it's me.. but life continues..

Anyhow I am looking at trials and who knows I may be the one for whom the drug works really well next time.. or a phase one that turns out to help us all wouldn't that be nice for a change, wouldn't that be nice..

It's been snowing here.. spring hey!?

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FOB, we are likely looking at the same trials. Have you considered or rejected any of these:

• Safety and Efficacy of BKM120 in Combination With Trastuzumab in Patients With Relapsing HER2 Overexpressing Breast Cancer Who Have Previously Failed Trastuzumab

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01132664

· A Phase 2 Study Evaluating Ganetespib in Women With Metastatic HER2+ or Triple Negative Breast Cancer

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01677455

• Investigating Safety, Tolerability and Efficacy of AZD5363 When Combined With Paclitaxel in Breast Cancer Patients

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01625286

· Safety, Tolerability & Potential Anti-cancer Activity of Increasing Doses of AZD5363 in Different Treatment Schedules

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01226316

Re: Not good news..
 

or these?

A Study of a Combination of Trastuzumab and Capecitabine With or Without Pertuzumab in Patients With HER2-positive Metastatic Breast Cancer (PHEREXA)

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01026142

A Study of Paclitaxel With GDC-0941 Versus Paclitaxel With Placebo in Patients With Locally Recurrent or Metastatic Breast Cancer

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01026142

Study to Assess Safety, Pharmacokinetics, and Efficacy of Oral CC-223 for Patients With Advanced Solid Tumors, Non-Hodgkin Lymphoma or Multiple Myeloma


http://www.ukctg.nihr.ac.uk/trialdetails/NCT01177397

Phase Ib, Dose Escalation Study of Oral LDE225 in Combination With BKM120 in Patients With Advanced Solid Tumors

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01576666

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FOB,
I think a good combo for you would be T-DM1 with Perjeta.
Stay strong,
Karen

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And a few more:

Could those board members who are a bit more research savy take a look and help narrow FOB's search to the most promising for her situation (lung mets)

An Open-Label, Multicenter, Phase 1/2 Study of Poly(ADP-Ribose) Polymerase (PARP) Inhibitor E7449 as Single Agent in Subjects With Advanced Solid Tumors or With B-cell Malignancies and in Combination With Temozolomide (TMZ) or With Carboplatin and Paclitaxel in Subjects With Advanced Solid Tumors

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01618136

A Study of BYL719 in Adult Patients With Advanced Solid Malignancies, Whose Tumors Have an Alteration of the PIK3CA Gene

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01219699

Dose Finding Study of RAD001 (Everolimus, Afinitor®) in Combination With BEZ235 in Patients With Advanced Solid Tumors

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01482156

Study of BMN 673, a PARP Inhibitor, in Patients With Advanced or Recurrent Solid Tumors

http://www.ukctg.nihr.ac.uk/trialdetails/NCT01286987

Re: Not good news..
 

FOB,
I hope these links work. They are all information on beta blockers and the effect on the adrenaline receptors. Could you not try something along these lines? What about a booster of the vaccine you had?

If the doctor says that the beta blocker could affect your blood pressure by making it lower (which I’ll bet it already is from all the stress to your adrenal glands) maybe you could offset that by sprinkling salt on your food and monitoring your blood pressure. That is what I was told to do 3 ½ years ago and I firmly believe it has helped me.The internist who put me on them said it would help with the effects of the chemo and Herceptin. I had some side effects when I started the pills but after about a month my body finally started to relax. This was when I was going through treatment the first time and only started the bb halfway through my 8 rounds of chemo . You could also try a 24 hour blood pressure monitor to see what your pressures are doing.

One of my doctors is certain I had adrenal exhaustion before I was diagnosed with cancer and that the thinking is that it (the adrenal exhaustion caused by cortisol levels and effect on other hormones) could be leading to chronic diseases and cancer. She told me to stay on the beta blockers because they are giving my body the break it needs.

I am still having some issues with one of my tumor markers rising and some bloodwork issues but I think the effect of the blockers has slowed things and do they not cross the blood brain barrier?(maybe someone here can confirm this?)

About 4 months after I started them, in early 2010, I think is was News who posted this link-
http://www.medicalnewstoday.com/releases/183717.php

And since then more and more research is coming out:

http://www.cancerresearchuk.org/canc...news/CR_093620
http://www.ncbi.nlm.nih.gov/pubmed/21632503
http://sciencelife.uchospitals.edu/2...gainst-cancer/
http://www.scientistlive.com/Europea...astasis/24313/

As always, check with your doctor to make sure it is right for you. Blood pressure is a fine balancing act and depends on what you take and what you do and careful monitoring and I don’t know if you’re already on something for your heart. Most of all it would really be beneficial if you could see an endocrinologist about a possible adrenal problem or a caring general practitioner who helps you with this issue, because some (actually a lot) of doctors will not recognize it.

Best Wishes and a huge hug!

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FOB, we all feel down and depressed when tired and sad, there are better days so keep fighting which is why you've come this far and accept the bad days as just that...tomorrow will be better. x

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Hi FOB,

I would be exhausted and depressed if I had all that happening to me too. Life goes on for others, and we cannot expect them to be sensitive to how we feel, but still, it would be nice if one of them would say: I know, it sucks. And give you a hug.

May one of the trials or treatments suggested be your magic bullet and give you lots of mileage and good QOL. You are not nearly at the point where you should be thinking about giving up. It can just be sooo hard to keep getting up after stumbling.

Imagine all our arms around you, keeping you up until that magic bullet is found. Imagine all of us hugging you when you are struggling.

And Spring will come soon. We had the coldest 23d of March since 1916, so it can only get better from here on.

Love

Jacqueline, the Netherlands