Looking for michka
 

Has anyone heard from her on this board.

She was deep in trouble last December.

She stopped answering my emails. So not like her.

I am deeply worried.

Any info you could offer me would be greatly appreciated.

I love this lady!

Andi

Re: Looking for michka
 

I love her too. I have no information, though. I share your worry.

Re: Looking for michka
 

Thanks Amy.

My concern grows with each day. And each non response scares me more. She always responds promptly.

Loving prayers sent her way...

Re: Looking for michka
 

I might be wrong but I think there was a post recently if I am thinking of the same Lady (lives in France?)
Juls

Re: Looking for michka
 

Michka's last visit on this site was Jan 30 2017. This is the last time she was logged into the site and visited. If she came and was not logged in, that wouldn't be recorded. Hope this helps a bit.

Re: Looking for michka
 

MISHKA IS ALIVE !!

I saw, as did you Becky that January 30 was the last time she was logged in, but saw no posts from that day.

I have been emailing her since December when she had a crisis and recurrence and was fighting both the cancer and the powers that be. You all know how that goes.

You must be persistent and tenacious, never give up, never give in and keep fighting proactively.

That is precisely what Mishka is doing.

I got the email apparently a few days ago but haven't looked at my computer for days. Fighting off a flu that is going around.

Husband, daughter, SIL, grandsons all effected.

So, I am trying to come to myself. Sleeping a lot.

Today I sat for a look and saw Mishka had responded to my PM to her. And it said she had emailed me two days ago.

So I checked and sure enough I got all the details.

She is very tired, weak, with multiple regiments of chemotherapy and trying for a blood biopsy ? and something else. Was told only certain hospitals in France do such things. But when she went to one of those, she was told she "wasn't a good case".

I so hate that. I know you all feel the same. If cancer isn't enough to battle with.

Wound up having to pay out of pocket but did just that and got results.

Some of the tumors in lungs are HER2+.

She had been told she was now HER2-.

So MAYBE now she can go back on Herceptin and derive some benefit.

Many more details. Not sure what she wants to share here but I asked her.

She will try to email again, but not promising as she is really having a rough time.

Just so grateful for the news and of course had to share with you all.

Those who PMd me I have told. Those I PMd initially (suggested by others as someone that might know but didn't see my post) I have also PMd.

So spreading the word.

Let's keep hope alive.

MISHKA IS A FIGHTER. PROACTIVE. PERSISTENT. TENACIOUS AND A STRONG AND BRAVE AND AMAZING WOMAN.

I LOVE HER SO.

My love to each of you as well. Always.

Andi

Re: Looking for michka
 

My heart went in my throat...thanks for your persistence ABB! Thinking of her. Cathy

Re: Looking for michka
 

Love and Hugs Ceesun. Always...

She is hanging in there. Having a really tough time of it.

I am praying.

Join me please...

Re: Looking for michka
 

Putting Mishka in my prayer journal. She is a wonderful person. I am so sad to hear she is struggling! Thank you, Andi, for sounding the alarm!

Re: Looking for michka
 

Thanks Andi for all of your positive energy and for sharing the news about Micha. Praying for her for sure. I can't even imagine the strength it takes to fight the system and the cancer.

Re: Looking for michka
 

Andi, thank you so much and I will pray for her along with all of you.

Carol Ann

Re: Looking for michka
 

Thanks Andi for this information. If she needs to go to a hospital near me - Cannes/Draguignan area ---- Nice for example, let her know she is welcome to stay with me.
love Sarah

Re: Looking for michka
 

Andi--

Bless you. Thank you for your persistence and your loving care. I pray she gets the treatment she needs to get back on track.

Amy

Re: Looking for michka
 

Thanks for the heads up Andi, I'll be keeping Michika in my thoughts and prayers and I'm sorry she's struggling.

Re: Looking for michka
 

Glad to hear Michka has surfaced. She has learned a lot about navigating the French medical system to get what she wants. Sure hope she can get back on something anti-HER2.

She lives in the greater Paris area, where she has major medical institutions to bang on their doors!

Hope to hear some good news from her situation.

Re: Looking for michka
 

I first want to thank you all for still thinking of me. It brings tears to my eyes. Please forgive me for not giving news. It is not very good so I do not like sharing it.
After Kadcyla stopped working and a liver biopsy showing I was no longer HER2 I had CMF chemotherapy (methotrexate, cyclophosphamide and 5FU). with Afinitor (everolimus), Aromasin and Xgeva. Then I switched to Gemzar Carboplatin with Ibrance (Palboclicib) and Faslodex and now I am on Methotrexate Carboplatin and Ibrance/Faslodex. It does not seem to be working. I now have oxygen to help me.

In September a brain MRI showed I had a small tumor in the muscle of an eye. I did Cyberknife in october and that worked. Then in January another brain mri showed I have 30 micro tumors in my brain.
The difficulty is to take care of the lungs (lymphangitis) and the brain at the same time. The oncs estimated the brain could wait the tumors being very very small and wanted to give a chance for the chemo to work for my lungs before doing WBR to the brain.
I wanted, since September, to have "genetic testing" and I kept asking all the time if some tumors could be non HER2 and some HER2. I ended up by getting an appointment in Institut Gustave Roussy, the biggest cancer and research hospital in France for this testing and maybe immunotherapy. They said it was not unusual to loose the HER2 factor after a very long period on TDM1/Kadcyla. When I went there I did not know about the brain tumors yet and there was "only" the lung problem and I was not yet on oxygen. They threw me out saying that they don't do testing for people who have less than 3 months to live and told me to go on Gemzar/Carboplatin. You can imagine how I felt.
I searched and found labs that could do the testing in Belgium but I also found a way to get the testing done by another research team in France and I asked if there was a way to "fast track " the HER2 factor. They are testing a solid biopsy from my liver and did a liquid biopsy. The problem is that all this takes time. 6 weeks. But the "good" news is that they called my onc to tell him that the first results of the liquid biopsy showed HER2 cells. I am still waiting for the full results.

I am seeing my onc on Tuesday. So what now? back on Kadcyla? I never had Pertuzumab but will they give it to me? Anyway, an anti HER2 treatment is worth trying again. Any idea is welcome.

So you see, I am in a poor state but I keep hope that the HER2 factor came back It gives me more options to gain a little time.

Love to all.
Michka

Re: Looking for michka
 

Michka,

I am so very sorry to read of your many struggles and set backs. It is so difficult to be your own advocate when feeling so exhausted and weary from harsh treatments. I admire your courage and strength! You are in my prayer journal and I am praying your perseverance pays off with HER2 agents such as Pertuzumab are ordered promptly for you when you meet with your Onc on Tuesday. May you get something and may it work brilliantly to put that monster at bay! Beseeching the gates of Heaven for you, Michka!

Re: Looking for michka
 

Michka

Look up copper reduction as a treatment for cancer. On the surface it sounds like quackery but it isnt. A Dr. Linda Vadhat has used Ammonium Tetrathiomolybdate copper reduction to treat triple negative breast cancer and has had excellent results keeping the disease at bay for years. The ammonium Tetrathiomolybdate 20mg 6 times a day (there are other protocols-this was the original one used by Dr George Brewer in 1999) lowers the srumk copper by 80%. You still have enough copper to live but the cancer cells need copper for angiogenesis as many of the pro-angiogenic proteins produced by cancer cells are copper dependent.

Here in the USA the FDA (for the time being) controlls everything and American doctors are afraid to buck them, and understanbly so. Perhaps docs have more leeway in Europe, I really dont know. The drug (ammonium Tetrathiomolybdate) is not FDA approved yet so the chemical is made into capsules by comppounding pharmacies at a cost of 6 dollars per capsule. The chemical is unstable and it takes some skill to compound them.

Once the drug is FDA approved it will cost 4000 per capsule and the FDA will approve it for advanced stages of some rare cancer to save the insurance companies money. Im pretty sure copper reduction used early in the disease will be the wave of the future. It takes about six months to reduce the copper enough but the Docs are not the Almighty. Who knows how much time you have? They dont. God does.

If you want to E mail me at Donocco5w4@aol.com feel free to do so. We are all praying for you.

Paulo

Re: Looking for michka
 

Dear Michka,

What an ordeal. I'm so sorry, my friend.

I hope you will be able to get Herceptin & Perjeta added to one or more chemo drugs. Or maybe you can get nerartinib on a compassionate use basis. "Waterdreamer" is doing that, and she has had an excellent response. Or tucatinib.

I think we can have mets that have different characteristics. My original tumor was 10% ER+, but later a lung lesion came up ER-. Guardant 360 "liquid biopsy" affirmed HER2+ (and, though there's no way to act on it right now, testosterone enhancement) but no estrogen. I have a bone met that always progresses when I'm on solely HER2 agents, so apparently it's triple negative.

I hope and pray you find a way forward soon.

All the best,

Re: Looking for michka
 

Michka, I’m so sorry to read about your struggle. I can’t believe that the Gustave Roussy research hospital threw you out, and didn’t do anything to help you. I can’t imagine how you felt. I’m glad you found a lab to do the testing for you. As Amy says, I hope you get Perjeta and Herceptin, or Nerartinib. Keep us posted.

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled