10 years and in trouble
 

Hi All. I was hoping to post a positive message for my 10th year on the cancer road but the report of my last liver MRI is not too good.
End of May, a MRI showed that the tumors in the liver had shrunk by 40% or for the smallest, not visible anymore after less than 2 months of returning on Kadcyla. But last week the MRI showed new tumors in the liver while the previous ones were almost all gone. And there may be a tumor on the L3 vertebra.
So the onc said, either Kadcyla stopped working, either you have 2 kinds of tumors and in order to know, a biopsy has to be done.
At this stage, he suggested nothing else and I must admit that I am not back on the boxing ring yet. My head is empty.
It is very very difficult if not impossible to get Pertuzumab is you are not using it as a first line metastatic treatment in France even if it did not exist 5 years ago. So I have to figure that out. I know I will find a way but it is really a stupid situation.

What do you think about some tumors growing and others disappearing at the same time in the same organ? Any hints?

Here is where I need your help: I will not escape a biopsy this time. But what should I ask for apart from HER2 or not, ER, PR? Where in the US do they do the best screening so I can contact them and understand what slides they need. If I do not ask and jump up and down to get exactly what I want analyzed, and slides to be exported they will do the minimum here. I would like to know if it would be interesting to get into a immunotherapy trial if I have the right characteristics for example.

I am sorry if this post is not very clear or cheery. Give me a few days to find my plan and I will be better.
....and please forgive my English. I have the feeling tonight that I cannot find the right words.

I still wanted to tell you all on this board that if I am still alive today after 10 years it is because two wonderful persons, Christine and Joe, decided to share knowledge but also love. Of course, we lost too many beautiful men and ladies and I remember their names, their pictures, their posts and mails and it hurts, but for the newcomers you have to know that most of the 10 year members are doing very very well, going on with their lives and that the treatments of today are so much better than the old ones. Last but not least: some members who are doing well even after being metastatic are still helping others on this board years after when they could just forget us. They helped me stand up and walk on the long road and still are. I love them.

Re: 10 years and in trouble
 

Hi Michka,

I don't have any advice but just wanted you to know I am praying for you and I hope you find a new plan as soon as possible.

I believe the biggest and best cancer treatment centers here in the US are MD Andersen in Texas, Memorial Sloane Kettering in NYC, Johns Hopkins in Maryland ... and I know there is a large center in Seattle, WA but I do not know the name.

And your English is superb, always!

I am sure someone with more knowledge than I have will post soon!

Carol Ann

Re: 10 years and in trouble
 

I'm sorry to read your news Michka and wish I could help but I can only send my love and good wishes and know you'll get the advice you're looking for here and be ready to fight again as you always have. Your English is perfect btw! xx

Re: 10 years and in trouble
 

Michka, I am so sorry to hear this. You have been one of those long term survivors who have given us hope over the years. I have no expert knowledge, but maybe you could get genetic testing done as well? We in Australia sometimes get this done in the U.S, but I am sure others will have more specific advice. I would also suggest at least one second opinion - sometimes a fresh view is needed.
Wishing you strength and hope..... Pam

Re: 10 years and in trouble
 

Dear Michka,

You express yourself in English beautifully! I'm so sorry you're facing this.

I don't know what to make of new tumors growing in the same organ where old ones are shrinking. It doesn't make sense, does it? I've had that happen in my lungs, with some getting better and some staying the same or getting worse.

My oncologist here in Denver suggested I get a blood test from a company called Guardant. (http://www.guardanthealth.com/). The test finds circulating tumor DNA and identifies "amplifications" and mutations. The information we got back was interesting, but nothing we could act on at the moment. Of course it found the HER-2 amplification. I also have one or two others, plus one or two mutations. There are drugs in Phase 1 clinical trials for at least one of the mutations (PK-53). My oncologist said if they can figure that one out it will be a cure (and most cancers have PK-53).

There is a new drug similar to Tykerb being developed. There is also a new form of Anthracycline.

Others on the board have gotten good results from adding an old fashioned chemo drug to Herceptin. Once you get your biopsy results, you and your team can come up with a plan.

Thank you for being you, for lighting the path for others with stage IV. And it was so kind and thoughtful of you to emphasize that many 10 year survivors are doing well. I appreciate you!

Re: 10 years and in trouble
 

I am so sorry to read your news Michka. You have been a long time warrior on this board and I am praying you will find a new treatment path to get you back to NED! I have no advice but just wanted you to know that I am thinking of you and hoping you find the resources you need.

Hugs! Jessica

Re: 10 years and in trouble
 

Hi Michka,
Sorry that you are going through this difficult news, hopefully once you catch your breath you will be able to continue to FIGHT for what you need!! I found this online, if you go to the link, there are links in the article to phone numbers and names of the researchers. This is a good place to contact, have a phone consult, and find out about sending your tissue there as well. Let me know how else I can help. xo xo Flori

https://www.mskcc.org/blog/powerful-...0-msk-patients

Summary (MEMORIAL SLOANE KETTERING)
MSK doctors have been using a powerful genetic sequencing test called MSK-IMPACT to analyze the tumor DNA of patients to learn about their cancer. The test allows doctors to detect mutations and other genetic changes present in tumors — information that can guide treatment choices and, in some cases, identify patients who are candidates for a cancer clinical trial. Recently pathologists at MSK reached a major milestone when they sequenced a tumor from the 10,000th patient.



These are other online MBC (metastatic breast cancer) groups, you might be able to post a question and see what comes back, or research what is already posted:

MBCproject Working Group

https://www.facebook.com/MetastaticBreastCancerNetwork/

Re: 10 years and in trouble
 

Bonjour cher Michka,

I can only offer my support to you, I hope you find the answers you need to keep fighting.

Your English est tres bonne!

all the best
caya

Re: 10 years and in trouble
 

Hi Mischka,
I am treated for metastats in liver and have had 8 treatments of Docetaxel/Pertuzumab/Herceptin and just 6 weeks ago went to only Pertuzumab/Herceptin.
I am from the Netherlands and know that my onc and the Clinic in Apeldoorn are great with repect to Her2neu patients. Maybe Holland is an option for you to do 'business'. It is a lot closer. Also we have the ALV-clinic in Amsterdam that do second opinions and such. Let me know if you need names and telephone-numbers. Keep strong!!
Kind regards,
Claudia

Re: 10 years and in trouble
 

Hi Michka,

Sorry to hear you have some progression in your liver and perhaps spine. You might also want ti look into trials in the Netherlands, England and Germany. I can help you with the first and perhaps with Germany. Please send me a personal message if I can be of assistance, as I don't always read all the messages on this board and I'm leaving for a short holiday on Saturday.

I have a friend in the UK who might be able to research options for you. Her husband is a pathologist. Just let me know.

Love

Jacqueline

Re: 10 years and in trouble
 

I'm very sorry for your progression news Mishka. In the absence of digging very deep know that excess copper in your system is stored in the brain and liver -- and copper/zinc dysregulation is at play in most breast cancer patients. HER2 particularly seems to have an affinity for low zinc and elevated copper, as does TNBC.

Can you get them to test your serum zinc and copper and ceruloplasim levels? Those are what my naturopathic oncologist has been tracking for me. When HER2 disease escapes radiation for instance, they are finding that it is doing so using the copper pathway -- so we really want to shut that down if there is something there. I did this in my body by taking extra zinc piccolineate which boosted my zinc levels and chelated out the excess copper (which was sky high when I was first diagnosed). This stuff isn't "standard of care" but it is scientifically based, even if mainstream oncology ignores it.

I agree that you are demonstrating a mutation of your original BC, and really one wants to know what they heck it is. Liver biopsies are frightening but usually they go without a hitch. Since you have been strongly ER+ it seems likely that the cell line could have mutated in that direction but really data is going to be more valuable.

The liver does have an amazing regenerative ability as an organ so the trick will be to figure out what is going on with this mutation and to shut it down.

There are some different therapies to consider in treating the liver: chemo, radiation, and interventional radiology (using ablative techniques). I'm not familiar with the medical system there but I have learned from experience that you have to be talking to the right person with the right background -- pressing to speak to specialists if needed -- to find out what your real options are. A surgeon might say cut it out, an MO would likely look at chemo options, an RO would say give it rads. An interventional radiologist though might say let's freeze the sucker -- but since these are developing practices and IR is a "newer" discipline, your docs might not go there on their own. You might need to seek private consultations which could be more expensive -- but standard of care isn't necessarily better and, sorry to say but I've been thinking about this a lot since my brain mets were found last year, not being here is a LOT more expensive.

Ask me questions and I will answer to the best of my ability or I will go look for more info for you.

Hugs,

Ann

Re: 10 years and in trouble
 

Mishka

Agness is 100% correct. A doctor from the University of Michigan in 2000 started treating advanced cancer patients with a copper chelator called Ammonium Tetrathiomolybdate in the year 2000. He got some long tem remissions.

Cancer is very dependent on copper. Lets say a woman has a lumpectomy and chemo. There are still cancer cells and stem cells left. They start to split by cell division.
At first oxygen simply diffuses along the small tumour. Once the cancer reaches a size of one million cells this is no longer effective and the cancer gets a too low oxygen tension to support it. Certain Hypoxic proteins emerge and these proteins stimulate other proteins and ultimately you ger Vascular Endothelial Growth Factor protein to induce the production of blood vessels for the cancer. Many of these proteins are copper dependent including Vascular Endothelial growth factor.

Brewer used the Ammonium Tetrathiomolybdate, 20mg six times a day for months to lower the copper level by 80%. With 20% of the base copper level left you have enough copper to support life but not enough to support making blood vessels for the tumour.

He would measure the copper level by measuring the copper binding protein called Ceruloplasmin. A normal Ceruloplasmin level might be 35mg per 100cc seum. Brewer tried to get this level down to about 7mg % using the copper chelator.

A physician named Linda Vadhat is doing this with some triple negative breast cancer patients and some have remained NED for years.

Look up Ammonium Tetrathiomolybdate or TM on the internet. There are compounding pharmacies that specialize in making up the 20mg capsules as the chemical is unstable and has to be specially made. The cost now is about 6 dollars a capsule and you have to take one capsule 6 times a day for 4 to six months. However once you get the copper level (ceruloplasmin level) down to 20% of normal you can keep it down by taking 50mg elemental Zinc three times a day and zinc salts are cheap.
When you take zinc three times a day a protein called Metalothionein forms in the intestine and this prevents copper absorbtion keeping the copper level down. It is well worth a try.

Paul