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

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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

Re: Not good news..
 

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

Re: Not good news..
 

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!

Re: Not good news..
 

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

Re: Not good news..
 

I know it is hard, but please try to stay positive and keep going.
Take good care of yourself. Treat yourself a little even if you don't feel like it.

Re: Not good news..
 

Sorry to hear the not so good news. Hope things will improve soon. Sending you good vibes.

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Thanks lizabeth for the research there are a couple there I had not seen.

so yep after falling off ny unicorn searching my unicorn again:
http://sphotos-f.ak.fbcdn.net/hphoto...08129336_n.jpg

:-)

Re: Not good news..
 

Beans,

Do any of those trials look promising to you?

Re: Not good news..
 

lizbeth thank you but no I am absolutly not qualifying for any

I thought I was PI3K mutated but I am not I am P53 mutated only and her2 I am PI3k negative PTEN negative and BRAF negative FGR negative and EGFR negative

I am therefore not qualifying for any and now that I have had herc lapatinib TDM1 and this last one it is 4 her2 targetted treatments it is over most her2 new product trials phase 1 which usually is max of 3 prior anti her2..

I feel like swearing a lot in between the tears

Re: Not good news..
 

Hey FOB..sounds like your beans are running a bit low! I don't have any new ideas for you to try, it seems like some of those trials seem worth looking into. I am sending positive energy to you across the great big ocean. By the time it gets to you it will be a tidal wave of hope and hugs! xo from Suzan and Bette

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FOB,

I absolutely have no expertise here. You unicorn is outside the Her2 box for sure.

I am curious with the P53 mutation - does Li–Fraumeni syndrome run in your family?

I read P53 affects arginine and proline. Are you having any issues with blood pressure? any issues with connective tissue or vitamin C deficiencies?

I also read that P53 is associated with angiogenisis. Have you tried Avastin yet?

I found this group in the UK doing work with P53. Are you familiar with them?


EMBO J. 2011 Nov 15;30(24):4921-30. doi: 10.1038/emboj.2011.419.
Regulation of p53 stability and function by the deubiquitinating enzyme USP42.

Hock AK, Vigneron AM, Carter S, Ludwig RL, Vousden KH.
Source

The Beatson Institute for Cancer Research, Glasgow, UK.


http://www.ncbi.nlm.nih.gov/pubmed/22085928/


I'd get out the juicer and load up on organic vegetables. Focus healing energy on your lungs.



Also in traditional chinese medicine the lung meridian goes from below the lateral clavicle by the axilla down the arm over the ante cubital crease to the radial edge of the thumb. Do you have any soreness or tenderness in these areas? The lungs are associated with the emotion of grief.



I found this posted on Livestrong: The cell cycle -- the sequence of steps your cells go through during cell division -- plays an important role in your health. Defects in the cell cycle can lead to diminished cell and tissue growth, while a loss of control over the cell cycle can cause diseases such as cancer. A gene and protein within your cells, p53 plays a key role in regulating cell division and can prevent diseases, including several forms of cancer. Several nutrients from your diet affect p53 function and activity, leading to a number of physiological effects in your cells.

p53 Function and Importance

p53 carries out a number of functions to control cell proliferation and growth and prevent tumor development and cancer. The protein controls the rate at which your cells can divide, allowing your cells to divide only when instructed by your body. In addition, p53 helps your cells react to genetic damage, repairing genetic mutations in cells before they proliferate, to prevent those mutations from being passed to the next generation of cells. Finally, p53 induces cell death in cells damaged beyond repair. By promoting cell death, p53 disposes of dysfunctional cells within your tissues, getting rid of the cell before it can cause a disease such as cancer.




Effect of Vitamin C

One nutrient that can affect p53 is vitamin C, or ascorbic acid. The ability to activate p53 in cancer cells proves important for cancer treatment. Many cancer cells inactivate p53, allowing the cell to evade death and go on to proliferate and form a tumor. The ability to activate p53 within these cells may halt cell proliferation, or even cause cancer cell death. Vitamin C is able to increase the levels of vitamin C within colon cancer cells, according to a study published by the Korean Society for Biochemistry and Molecular Biology in 2011. In addition, treating the cells with vitamin C was able to increase the efficacy of the chemotherapy drug cisplatin, inducing more cancer cell death than using the drug alone.
Effect of Vitamin D

Another nutrient with an effect on p53 is vitamin D. Similar to vitamin C, vitamin D may promote cancer death by activating p53. A study published in "Investigative Ophthalmology & Visual Science" in 2003 indicates that treating retinoblastoma cancer with vitamin D was able to increase the levels of p53, as well as other anti-cancer proteins within the cancer cells, leading to retinoblastoma cell death. Though these results have not been investigated for use in humans, vitamin D might prove beneficial for controlling some types of cancer by activating p53.
Effect of Selenium

An essential mineral with an effect on p53 is selenium. Selenium contributes to a number of proteins, and some of these selenium-containing proteins can interact with p53 in your cells. Specifically, the selenium-containing protein SeMet can activate p53 in response to genetic damage, helping the cell to repair its DNA, according to a study published in "Anticancer Research" in 2006. As a result, selenium may prevent cancer development. By allowing your cells to repair themselves, selenium fights the accumulation of genetic mutations required for cancer growth. The use of selenium to prevent some types of cancer is the subject of clinical trials, as of 2011, and the mineral might present a viable cancer treatment.

Re: Not good news..
 

http://clinicaltrials.gov/show/NCT01664000
I too have p53 mutation and this seems a promising compound but seems only to be in US.

Re: Not good news..
 

Mamandoo thank you I saw it but indeed it is in the US.. I am limiting myself to europe for health reasons especially when it is a treatment that is to be carried on..

p53 mutation are present in about 70% of cancer. So thousands and thousands of 'groups' are studying it in the lab but translational research has been slow i.e clinical trials. China's gov has patented the first gene therapy treatment about 4/5 years ago but there are (including myself ) many sceptics, I would not trust the efficacy data they presented.

I have seen a few clinical trials i could join in the US unfortunatenately choices are much more limited here in the uk.

Re: Not good news..
 

Yes - P53 in some respects seems a cancer "holy Grail". I got results of testing back yesterday confirming the p53 mutation but also showing GBR7, IDH2 and ERB3. From my reading the GBR7 is also an issue in triple negative and currently no targeted therapy or trials. I have decided that it is only now that this testing is becoming more mainstream and that we have no idea which elements are more important in driving our particular cancer's growth - therefore, Her2 treatments are still important and may have a beneficial impact and TK inhibitors too. It seems that no-one understands the interaction of all of these mechanisms. I am in Australia and trials are now limited too. I truly hope you will find something to try. I have read about the Chinese genetic treatment but skeptical also. The one I listed is now in human trial and is interesting. Merck, Roche and Sanofi are also nearing human trials but some are particular cancer not broader. Have you considered trying to access Perjeta through compassionate access? What about other tyrosine kinase inhibitors - Afatinib and neratinib if there are trials for those and avastin as an option too.

Lizbeth - thankyou for your references. I believe had my vitamin D levels been adequate when I would not have had metastasis - I believe it is truly underrated.

Re: Not good news..
 

Mandamoo I am also convinced that it is my lack of vit D that led to cancer, convinced. But once it is there it is a different story..

Re: Not good news..
 

Amanda,
On the triple negative, have you heard of the copper depletion trials?
Karen

Re: Not good news..
 

Hey FOB!

Thinking of you, and wondering if you feel up to giving your dear friends an update. How's your breathing? What new plan of action did you decide on?

How's your puppy?

Miss you! Sending love and light to you across the miles!
Denise

Re: Not good news..
 

Thinking of you also!

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Thinking about you, too, Beans! Hoping things are looking up for you there across the pond, Amanda.

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Thinking of you FOB. You are a mighty warrior. Even mighty warriors get down once in a while. Best,
Rebecca

Re: Not good news..
 

Hey just checking in on you and wondering how you are doing? Im hoping you and your doctors have found something that looks promising. Big cyberhugs and prayers headed your way.

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Praying your doing well and anxiously waiting for a check in. Gods blessings to you

Re: Not good news..
 

I'm thinking of you too, Beans. Praying for a plan that helps. Gentle hugs.

Barb A.

Re: Not good news..
 

Bumping this up.

Hi FOB
Wondered how things were going and if you had sorted a new plan? Still have bed for you here if you find any trial in my neck of the woods.

Ellie