Bad Pet. I need you.

[michka]

Hi Friends.
I am writing through my tears. I am devasted. I just had the results of Pet/Scan. Pet/Scan that I asked for although my liver MRI was OK a month ago and although my last PET/Scan was done in October and was OK. My CA15.3 tumor markers were slightly over normal (28-30) and I didn't like that. I insisted and I was unfortunately right.
Results:
-multiple very small spots in lungs (biggest 0.9cm3 SUV max 2.9)
-one spot in liver, same place as one of the old tumors (1cm3, SUV max 4)
-Lymph nodes in "anterior mediastinum" (one 2.7cm3 SUV max 12.3 second 1.7cm3 SUV max 9.2)
-Lymph nodes "lombo aortique" region and liver hilium (biggest 0.7cm3 SUV max 4.2)

All this is bad, very bad.
I do not know why they indicate cm3 and not cm.

Bones: nothing. No trace in sternum. Sternum completely normal. (well, this means that Cyberknife is a very good option. I am happy to share
this with you since very very few patients have tried it yet).

All this means that the stupid cancer is winning. I do not know what to do. TDM1? It is VERY VERY difficult to get in a trial in France because they are only starting. Did TDM1 help anyone on lymph nodes? Taxanes? I had Taxol that did not work at all in neoadjuvant treatment. Can a taxane work although it did not before? Did anyone have results with Pertuzumab?
What do you suggest?

My head is exploding I just would like to wake up from this nightmare.
Please forgive my English and my translations of medical terms but my head is not functioning.
Please forgive me for not posting these last weeks and for not supporting others who are suffering. I read all the posts but I was so afraid of the coming Pet/Scan that I could not give hope. I saw Sheila's post. Our wonderful Sheila. 10 years. Terrific but that doesn't count. I want dozens of other years for her. I saw the pictures and felt like tearing apart the mask on her face and body. She deserves the best. Not that. But I am hoping with all my strength that it will work. I am also with Jessica, Karen, Courtney... and too many others.

I have so many things to do yet. One of my sons is 27. He is pulling out of drugs. I am helping him every day. He is winning that fight and I am so proud of him for that but if he learns I am in a bad state again, I am afraid he will collapse. So I will hide it from him the longest possible.
I suffered so much from chemo each time that I don't feel I can take another one and chemo and herceptino never worked for me.

Love to all.
Michka

[PinkGirl]

I'm so sorry you got this news Michka. You need some time now to regroup and come out fighting. I know the wise ones here will chime in and help you with your plan of attack.

Pet scans show the volume of tumours ... that's why the measurement is cm3 ... it's centimetres cubed.

Stay strong ... we are all here for you. Don't forget to breathe...

[NEDenise]

Michka,
So sorry to hear this disappointing news. Give yourself permission to cry as much as you need to before you regroup, and get back in the fight. Our sisters with more wisdom will have advice and counsel for you. You can do this!
I'm sending prayers and positive energy your way.
Pleas keep up posted.
Denise

[Sheila]

Michka
I wish I was closer to give you a big hug right now....this is not the news we were hoping for, for now you know what you need to fight....I know howmhardnitnisnwhen we get bad reports, but you have so many options yet....I have gotten rid of the mediastinal and hilar nodes through chemo...the Halaven (Eribulen) and the Gemzar...both with Herceptin....I did not have much success on the Tykerb Herceptin combo.....also maybe Taxotere would work....a little different than Taxol....Pertuzamab also sounds very promising....please try to remain positive...there are still options for you...hoping others will chime in.....extra prayers for you today dear Michka....for answers and the perfect drug.....stay strong, we are here for you.....sending peace and many
Prayers and Love to you.......

[chrisy]

Dear Michka,
I'm with Sheila wishing I could give you a big hug, squeezing all the air out of you so I could remind you to breathe. Heck, I'll remind you anyway. Breathe.

While this is not "good" news and certainly not what you were wanting to hear, it is information you needed to have and I really applaud you for pushing for it. I read a book written by a cancer survivor once and her main point was to not empower the cancer by honoring it with the words she used. A good scan was "FABULOUS, WONDERFUL news". A bad scan was just "information". Easy to say, hard to do I know!

So, you have information that the cancer has not given up. As Sheila said, there are many options which can work, maybe very well or even just to "buy time" until you can access TDM1 and/or Pertuzumab.

I know you feel devastated, take the time you need to cry it out and take care of yourself. Then get mad, stand up and rejoin the battle with the best new weapon you and your oncologist select.

By the way, they say "cm2" to indicate it is, say 1cm x 1cm (2 dimensions).

Hugs and much love,
Chris

[sarah]

Desole. What about traveling to another European country, is that a possibility. Do you know where they are having tests? I know it's not easy to get into them sometimes because of the requirements.
health and happiness
love sarah
ps I live in the Var.

[michka]

Thanks Ladies. I take all your hugs and it makes me feel better. I am shocked that so many places can be active in such a short time. I felt good.
Sarah, I can travel but I haven't found were there are TDM1 trials in Europe. Marianne trial is still posted on Institut Curie's site but it does not seem active. I am seeing my onc tomorrow and will have him call. I have to try to call Roche also. Sarah if you can when you see your onc in Nice ask him please if he knows of any trials in Nice or Marseille.
Sheila, Halaven and Gemzar is a good idea. Taxotere? I don't know and I don't have the courage right now. My hands and feet never recovered from Taxol.
It is difficult to see my companion suffer with me. He never cries but had tears in his eyes. He does not believe the pet saying I have a horrible cold and that the day before I was gardening like a nut doing heavy work and that that must have influenced the PET. I figure it is his way of accepting the situation slowly.
Any other ideas are welcome. (and hugs!)
Michka

[ElaineM]

Here is a cyber hug for you !!!!!!!!!! Sometimes it helps to put not so good news aside for a day or two and try to concentrate on other things when we get not so good news.
Have lunch with friends or cook your favorite food if you enjoy cooking. Watch a good movie. Take a drive somewhere beautiful.
Then after you are relaxed and can contrate better jump in and figure out what to do about the problem.
All the best to both you and your son. Take good care of yourself. Stay positive.

[Shobha]

One more hug coming your way. I am also praying for you and your son - it is heart wrenching to read how brave you are being for the sake of your son! Wishing and praying hard that you find the right combo asap and beat it.

-shobha

[BonnieR]

Dear Michka, I join the others is offering long distance hugs and hope.
I am also someone who has many years of subtance abuse recovery under my belt. I have worked in that field too. I want to suggest that you not use all your energy "protecting" your son from this new reality. Because it IS reality and part of his recovery is going to be learning how to cope without using drugs. Who knows, perhaps sharing the news will make him feel more driven to stay clean and sober so he can be there for you. Incentive for him. And he is going to find out sooner or later and may wish you had trusted him with the information now. He may prove to be stronger than you think
It is none of my business, of course, and I hope I have not offended you by offering my thoughts on the subject.
Keep the faith.

[WayTooYoung]

Michka,

I wish you luck in finding a TDM1 trial in Europe. I just started my first trial (Toronto) and I am very hopeful. I totally understand how you feel but I pray that you keep the faith. FYI, the drug is on the brink of getting FDA approved.

Please continue to keep us posted. XOXO N

[Rich66]

Taxotere and Abraxane are potentially active taxanes after Taxol exposure. Gemzar and Abraxane may be a very good combination. Ixempra, Halaven, Pemetrexed, Xeloda...various endocrine therapies still untouched...could be combined with some of those chemos and/or Her2 therapies. Metronomic dosing options of same chemos. Maybe Everolimus soon...Metformin ;)
A single spot in liver could be cryoablated. Same with small spots in lung.
Hopefully in the meantime advancements in immuno therapies.

[Joan M]

My heart goes out to you. Don't give up the ship ever!! There are many chemos that you have not yet tried, and also trials. Try to contact Roche about whether you can enter a T-DM1 trial. Ask them about Pertuzumab's approval in the EU. The CLEOPATRA trial was very successful, and the FDA is going to give the drug a quick review in June, rather than waiting the normal 10-12 months. Look at clinicaltrials.gov. I believe it also lists sites outside the U.S. where breast cancer trials in general are being offered. If you are able to come here, you have that option.

What treatment is your oncologist proposing? Are you able to get a second opinion if you wanted?

Many hugs, love,

Joan

[Jackie07]

Michka,

Rich has listed lots of options. Most of the mets you reported are small. A different chemo combo may very well stop them. Keep your hopes up. I'm a strong believer of the effect of endorphin on our immune system. Eat well, rest well, exercise well - things will work out. Get a 2nd, 3rd opinion after your appointment tomorrow if your doctor doesn't have a good plan.

Sending you good vibes.

[caya]

Michka, I am also sending big hugs across the ocean to you. Please know that there are still many options for you, we are all cheering for you.

B.A.T.

xoxoxoxox
all the best
caya

[Becky]

I am so sorry you have had bad news. You have not had chemo for awhile - just targeted therapies. See if you can change to a different antihormonal (change from Aromosin to Femara or Arimidex or Faslodex). Make sure you stay on the Herceptin and add a chemo - perhaps Taxotere or Abraxane or something entirely different than a taxane.

There are alot of things to try - or look at a trial of some type. Now that you can breathe, you can also think and act and I know you will. You have good instincts and have done alot of the right things already. You will this time too.

[KsGal]

Well, for one thing, thank the good lord that you pushed to have that scan, or you and your doctors would not know those new areas were there, and they could be much bigger and more widespread before you even began any treatment for them. I am so sorry that you did not get the news from your scans you so hoped for. Im sending you all the cyber hugs and positive energy and prayers possible, and I know a lot of others are too. There are a lot of combinations out there that you have not tried yet, and Im sure that one of them will be effective for you...

[Bunty]

Michka, a big hug coming from down under. There are many wise words here in response to your post, so I hope they restore your hope. I definitely think there are still many options for you yet.
Marie xx

[sarah]

hello Michka,
I already emailed our chemo nurse to have her ask where there are TDM-1 trials. She generally replies on Sundays so if she does I will let you know.
March 7th I will be at the cancer hospital (CAC, centre azureen du cancerologie) part of Tzanck in Mougins (not Lacassagne in Nice) and can hopefully find out more then.
What is your original nationality, just curious.
As others have said, lots of good chemo combos out there.
hugs and love
Sarah

[sarah]

also this is the place I went with a friend hoping to get into the tyberb trial:
http://www.institutpaolicalmettes.fr/
so they are probably set up there to do tests.
just a thought
hugs and love
sarah

[michka]

Hi Sarah. Thank you so much for asking around you. I saw my onc today. It was strange. He kept looking at the Pet/Scan and said he wanted a scan next week and that then we would see. He seems to question some of the spots but did not say that that clearly.(Especially for the lungs(. He then said that if we can have a biopsy of a node he would ask a Dr in Gustave Roussy to do a chemo test on it plus on the slides from my last liver resection. I didn't even know they did that in France but it seems to be a sort of study in IGR in cooperation with a US hospital. I don't know more. Another week to wait. I am trying to keep my mind busy.

My original nationality? Well I am born in NY, in Sloan Hospital, from an American mother and a French father. My grandparents on my mother's side were American. My grandfather on my father's side became American before the war and my father became American just after the war towards 1946. So he was also american 10 years before I was born. My parents moved to France in 1960 when I was 3. So I learned English by speaking with my mother and I worked for american cies for years.. That's why my English should be better! But after 52 years in Paris and a poor brain....

[sarah]

You're english is perfect that's why I wondered and you have an unusual and lovely name - I thought maybe Russian background.
I lived in NY for many years and loved it, what an amazing city!!!
Sounds like you are in wonderful hands regarding your cancer and that's so important.
hope the next scans are clear.
hugs and love
Sarah
ps if you get down this way, let's get together.

[gdpawel]

Michka

The fact that your doctor would like a biopsy of a node is a positive step in the right direction, instead of more trial-and-error treatment. Tumor hormone-receptor and Her2 status can change in breast cancer patients during the course of their disease, and these changes can significantly influence survival and can completely change the patient's clinical management. Results of a 2011 European Multidisciplinary Cancer Congress study showed that there is substantial tumor instability during tumor progression.

How and what type of chemo test your doc has in mind, may have some bearing in the matter. The slides from your last liver resection may not have any affect in testing on what may be your disease now. There is the issue about cell-lines (slides) vs fresh cells. Cell-lines have always played an important role in drug screening and drug development. The problem is that cell-lines do not predict for disease or patient specific drug effects.

As a general rule, studies from established cell-lines (tumor cells that are cultured and maniplated so that they continue to divide) have not be very successful as models to predict the activity of drugs in cancer. An established cell-line is not reflective of the behavior of fresh "live" tumor samples (like from the node) in primary culture, much less in the patient. You will get different results when you test passaged cells (from cell-lines) compared to primary, fresh tumor.

My thoughts would be, do you want to utilize your tissue specimen for drug selection against your "individual" cancer cells or for mutation identification to see if you are "potentially" susceptible to a certain mechanism of attack?

Best of luck!

Greg

[StephN]

Dear Michka -
We are not happy to hear that you have those new issues to deal with. But I do like the fact that your onc wants another scan (what kind?) next week to coroborate this last one that is throwing you for a loop.

Was also thinking about a biopsy since you may have some tissue that can be gotten at for analysis. I imagine he would want the slide from your liver to compare with a new tumor biology.

There are many ways to go at these tumors, just as soon as your doctor is sure about what the scans say.

If you try for T-DM1 before you have had some other drugs, it may disqualify you from their use in future. Try to check the drug ladder for the new drugs and trials.

Certainly you feel bad for causing pain to those closest to you, but they are there for you and know that you have been fighting the NERDy cancer with all you have.

Hugs and bises.

[Mtngrl]

Dear Michka,

I would also hug you too if I could. I like the suggestion to think of it as "information." It doesn't mean the cancer is "winning." I'm glad you got the information and can take it from here.

There are people on this site who have beat the cancer back many times. You can too.

So disappointing. I'm sorry you are having to go through this.

[Elizabethtx]

Hugs and prayers for you from Texas. The first step has been taken. You know the facts, now find the treatment! Cry a few tears, then put a step forward to betting the beast!

[michka]

Thank you all for adding hugs and support. It makes me feel better.
Greg, thank you for your post. I learned a lot! Knowledge is important. In fact what the onc would like to do is a chemo sensitivity test. So I understand that they need fresh cells. I had a BRCA test in 2007 which was negative. The liver tumor was tested after resection last march and it was still HER2+ and ER+. So what the onc would like to do is not loose time and weaken me with chemos that have no chance to work. Greg, do we know how much chemo testing on fresh cells is reliable? And what chemo do they test? For example could they test if taxanes is an option although it did not work the first time?
Questions, questions...my head is empty. My heart is heavy.
Michka

[sarah]

Hello,
just curious, where are you being treated? sounds like you're in great hands. Greg, as usual has great info
take care
love sarah

[gdpawel]

Michka

It's going to depend on the understanding your onc has of a chemo sensitivity test. There are DNA/RNA-type tests based on "population" research (not individuals), virtually the same as it is with tradiational trial-and-error treatment protocol. They base their predictions on the fact that a higher percentage of people with similar genetic profiles or specific mutations may "tend" to respond better to certain drugs. This is not really personalized medicine, but a refinement of statistical data. If you are okay with that, go for it!

Then there is cell-based functional profiling, which provides a window on the complexity of cellular biology in real-time, gauging tumor cell response to chemotherapies (conventional and targeted drugs). By examining drug induced cell death, functional analyses measure the cumulative result of all of a cell's mechanisms of resistance and response acting in concert. Functional profiling approximates the cancer of the "individual" not populations.

The labs vary considerably with regard to technologies, approach to testing, what they try to achieve with the testing, and cost. Some labs have been offering these assays as a non-investigational, paid service to cancer patients, in a situation where up to 30 different drugs and combinations are tested, at two drug concentrations in three different assay systems. The larger the specimen, the more drug types there are in the selective arsenal (minimum 1gm).

For these functional profiling assays to be extremely effective, they need fresh "live" tumor specimens. There are very good reasons for using fresh "live' tumor specimens and not needle biopsies for cell-based functional profiling assays. The surgical specimen is the "personalized" part of personalized cancer medicine. In the body, cells interact with and are supported by other living cells, both malignant and non-malignant cells. That is why cell-death functional profiling assays study cancer cells in small clusters, or microspheroids (microclusters).

Analysis of these microspheroids provides a snapshot of cancer's behavior within the human body and provides a more accurate representation of how cancer cells are likely to respond to treatment in the clinic. It will be indicative of what will happen in the human body.

There is no manipulation of isolated cancer cells to make them grow, which was an important point of distinction with earlier cell-growth assays.

Real-life cancers grow as a complex organism that includes both malignant and non-malignant components. It may include fibrous tissue, mesothelial cells, fibroblasts, endothelial cells, etc.

In order to exhibit its most characteristic behavior patterns, a cancer cell needs to be surrounded by a colony of other cells, both normal and malignant.

Human tumors represent micro-ecosystems composed of transformed cells, stroma, fibroblasts, vascular elements, extra-cellular protein matrices and inflammatory elements.

The behavior of human cancers and their reponse to therapy reflect the complex interplay between humoral, vascular, adhesion and cytokine-mediated events acting in concert.

Tumors are very complex organisms. Ignoring this complexity, most studies of human cancer in culture have focused upon individual tumor cells that have been removed from their complex microenvironoment.

Cells are routinely broken up by mechanical and enzymatic means, which alters their subsequent behavior. Some previous methods of assays limited their analysis only to isolated tumor cells and failed to incorporate the crucial contribution of non-tumorous elements to the cancer phenomenon.

When allowed to grow in vitro, living cancer cells develop into these tiny micro-spheroid clusters that form a complex biosystem in which each malignant cell reacts upon its fellow colonists in subtle but important ways.

Each of these microspheres contains all the complex elements of tumor biosytems that are found in the human body and which can impact clinical reponse.

In short, it is a complex and thorough analysis. Not many medical oncologists understand it. Don't know if your onc does. Perhaps though, he/she does! The fact the he/she would like to do a chemo sensitivity test and not loose more valuable time and weaken you with ineffective chemotherapy, is a good sign.

Don't know whether he/she intends to ship a specimen stateside or use one of the European labs. All of the labs are experienced and capable of providing very useful information.

Greg

[Rich66]

If the onc is using pursuing a test of chemos on live cells (chemosensitivity as opposed to characteristics), my understanding is that the ordering oncologist picks from a list of available agents..this may be guided by the lab supervisor also. Unfortunately, the size of the tumor sample typically limits the number of chemos that can be tried. Since it's a test at a given point in the disease, I think it's important to focus on agents that you could actually gain access to...not investigational drugs with unknown timeline for availablity. Another issue in terms of not wasting time i.e. thinking ahead is that for actual chemosensitivity/functional profiling tests, they usually want a few weeks off therapy to prevent confounding test results.
For best feedback here, it would be good to find out exactly what test/lab your onc is considering.

[michka]

Thank you Greg. More information to understand. First as Rich pointed out a simple biopsy may not be enough. They would have to take out some piece of tumor somewhere. I will have to wait next week to see what is reachable. Then if it is a long process I may not want to wait but I do not know. The place where it could be done is Institut Gustave Roussy which is a very big cancer and research center. For now I am trying to find a place in France or in Europe where they have a TDM1 trial but I have not found one yet. On the US site for Clinical Trials the TDM1 ones indicate no foreign locations but I just started looking and my brain is not working very fast. Michka

[gdpawel]

Good point Rich. Patients' patterns of sensitivity and resistance do not change in the absence of intervening chemotherapy. And even after a patient fails a previous chemotherapy treatment, the test still can be done once a patient waits at least four weeks. If proper protocol is followed, evaluability rates are very high. Greater than 95% of all specimens submitted produce clinically useful results.

Rather than mixing and matching approved drugs, assayists have used combinations designed to work in tandem to block cancer. Twenty years of work on the human genome has helped illuminate the intertwined mechanisms of cancer. Scientists are beginning to understand the cellular and genetic links among different disease pathways. As a result, the FDA is ready to allow innovative testing of drug cocktails.

Among the most sought after attributes of chemotherapy drug combinations is drug synergy. Synergy, defined as supra-additivity wherein the whole is greater than the sum of the parts, reflects an elegant interaction between drugs predicated on their modes of action. While some synergistic interactions can be predicted based upon the pharmacology of the agents, others are more obscure.

The application of synergy analyses may represent one of the most important applications of the functional profiling platform, enabling clinicians to explore both anticipated and unanticipated favorable interactions. Equally important may be the platform's capacity to study drug antagonism wherein two effective drugs counteract each others' benefits. This phenomenon, characterized by the whole being less than the sum of the parts, represents a major pitfall for clinical trialists who simply combine drugs because they can.

Going after a surgical/biopsy specimen has a role in eliminating ineffective agents and avoid unnecessary toxicity and in directing "correct" therapy. Patients benefit both in terms of response and survival from drugs and drug combinations found to be "active" in assays even after treatment failure with several other drugs, many of which are in the same class, and even with combinations of drugs found to have low or no activity as single agents but which are found in the assay to produce a synergistic and not merely an additive anti-tumor effect.

There would be a huge advantage to the patient to receive a "positive/sensitive" drug, compared to a "negative/resistant" drug. As I stated before, the time and energy required to conduct an excisional biopsy pales in comparison to the time, energy and lost opportunities associated with months of ineffective, toxic therapy.

[gdpawel]

Michka

Yes! The Institut Gustave Roussy signed a license agreement with ExonHit a few years ago for a novel breast cancer "diagnostic" assay. The "diagnostic" value of this new signature allows for the discrimination between malignant tumors and benign lesions from cells sampled through find-needle aspiration.

And they are using cell-death assays for "drug discovery." It may be helpful to use a form of chemosensitivity testing, which is based upon the measurement of actual cancer cell death. The results of cell death endpoints (point of termination) agree with each other pretty well with hematologic and lymphatic neoplasms (non-solid cancers).

As for using cell-death assays for "drug selection," here is a contact email for Dr. Andrew Bosanquet, Bath. Dr. Bosanquet has a list of labs in Europe.

agb.scientist@gmail.com

Here is a contact email for Dr. Ian Cree, Queen Alexandra Hospital. He does the ATP cell-death assay.

ian.cree@porthosp.nhs.uk

You can also ship tumor specimens via FedEx or World Courier to any of the labs in the United States.

Best of luck on your endeavors!

Greg

[schoonder]

Michka following links show sites where t-dm1 are looking for participants.
Marianne phaseIII trial - 1st line MBC
http://www.clinicaltrials.gov/ct2/show/study/NCT01120184?term=emtansine&rank=2&show_locs=Y#locn

Emilia phaseIII trial - 2nd line MBC
http://www.clinicaltrials.gov/ct2/show/study/NCT00829166?term=emtansine&rank=6&show_locs=Y#locn

T-DM1 vs physician's choice - 3rd line MBC
http://www.clinicaltrials.gov/ct2/show/study/NCT01419197?term=emtansine&rank=3&show_locs=Y#locn

A phaseI about to get underway
http://www.clinicaltrials.gov/ct2/show/NCT01513083?term=emtansine&rank=1

Looking with search key "t-dm1" or "emtansine" in http:/www.clinicaltrials.gov repository will show number of still active trials.

Hope this helps.

[Rich66]

Greg,
I think you meant fine needle aspiration.
Are they somehow able to get enough cells for chemosensitivity testing that way?

[gdpawel]

Rich

Thanks! Fine-needle aspiration, as in trying to fine-needle my way through reading glasses that need cleaning, badly. I put the word "diagnostic" in quotes in regards to fine-needle aspiration. A fine-needle aspiration does not preserve the histological architecture of the tissue cells, needed for "drug selection." An incisional biopsy or core biopsy (tru-cut) preserves the histological architecture of the tissue cells.

Greg

[krisvell]

Hi Michka;
So sorry to read that you did not receive a good report. The Stage IV ladies including you give me great hope and inspiration. It sounds like you have many options which is WONDERFUL. I pray that you stand up and brush yourself off and start fighting, So far, you have done well. You can do it again.
Love & Hugs,
Kris,,,,

[Rich66]

Ok..so Greg..you are essentially saying the test Michka is being offered where she is at is not a true chemosensitivity test? Sometimes less detail is more at the patient end ;)

[gdpawel]

Rich

They are using a cell-death assay for diagnostics and drug discovery, not necessarily for drug selection. If they are using fine-needle aspiration for drug selection, then the histological architecture of the tissue cells will not be preserved, making for less accuracy in the testing.

[Rich66]

What do you mean by "drug discovery"?

[gdpawel]

Development

[CoolBreeze]

Michka,

I am sorry I didn't see this until now. I have - many times - seen women with mets even larger than yours end up NED on chemo. So, please don't give up yet. There is still hope.

I can't advise you on treatment in France but surely you can try other chemos. Navelbine, Halavan, Xyloda? Is tykerb available where you are?

If your doctor doesn't give you options, find another who will, for there are options. If the French system doesn't let you switch, well, break the system and do it anyway.

Big hugs to you. You have lots left to do. And, congratulations to your son coming out of addiction - I hope he continues. I agree with Bonnie. I have parents who have been substance abusers all my life and my mother is dead from it and my father not doing well. The thing is, they have to face reality and learn a different way to cope. So, please don't protect him from any news but tell him that he can cope without drugs.

Many hugs from me.

[Paty]

Hugs and prayers for you Michka. Hoping a right treatment is found soon for you. Keep up the faith.

[sarah]

Michka,
You do not seem to have a good support group at present. Please be in touch with me. I am part of a support group here in Mougins at the Tzanck group, Centre Aszureen du Cancerologie and we have two wonderful psychologists in our team and the head nurse for chemo. We have a lovely French woman who is a very active and caring member - I mention this assuming you are French and of course I am always available also.
While I can't give you any medical advice, I can help you research things or at least listen to your worries and let you speak about things that you seem to prefer not to talk or worry your companion or son with.
also of course you have people on this website there to help you also with support and medical experiences and knowledge.
I believe that your son may take this as an opportunity to help someone and that might just be what he needs to get out of his troubles. People can surprise you positively sometimes.
Don't try to solve all of this by yourself. You are not alone and shouldn't be.
call me, skype me or email me
hugs and love
Sarah
ps which hospital are you at in Paris? who's your oncologist?

[Ceesun]

Michka, J'en suis desolee mais vous allez trouver une solution avec votre medecin.

C'est tres difficile, je sais, et moi, J'ai peur mais il faut continuer, nest-ce pas?! Sincerement, Ceesun

[Mary Jo]

Consider yourself hugged from me too. I'm so sorry Michka. Although I have no advice or suggestions, there are many here who do! Prayers for you Michka.

Mary Jo

[Delaney]

Thinking of you michka, lots of love.

[schoonder]

Michka,
Roche in April is planning to start a new T-DM1 trial in Brussels; particulars via link:
http://www.clinicaltrials.gov/ct2/show/NCT01565200?term=t-dm1&rank=3

[caya]

Bumping this up , hoping from an update from our dear Michka.

Michka, comment ca va?

all the best
caya

[KDR]

Michka is o.k., I've heard from her. I'm sure she'll be posting soon. Come out, come out, wherever you are!
Karen

[caya]

Thanks Karen.

yes Michka, come out, come out!!

xoxo
all the best
caya

[fullofbeans]

yes I too heard from Michka a little while go she is going to the trial TDM1 teresa and yet does not know what she will be randomised to until the 11th Ap.. and get treatment then if things have not changed since then..

We are a bit on the same boat randomisation is such a hard thing to go through.

My thoughts are with her and us all..

[michka]

Oh thank you for thinking of me!
I am waiting waiting waiting and I am fighting to get in the TDM1 Teresa trial in the south of France. I will know on the 11th if I am in the right arm. I had to do a scan, a brain mri, a bone scan, a heart echo all over again and they asked for slides from my last liver operation so they could check the HER2 status. They have to send the slides to Germany although I have all the pathology reports from Institut Gustave Roussy, one of the biggest cancer center in France. All this is very long. Too long.
I am not very well and my liver is letting me down little by little. I have pain, I cannot eat very well and now I have itching all over. I don't know what to do about the itching. I hope I will be in the TDM1 arm because I believe in it and also because I think my liver will not take a harder chemo. I felt so bad for Kelly who was not accepted in the TDM1 arm. There is no crossover in this trial. This is not right. I am not giving up but all this process is crazy for women who need a treatment. I figure they think we are already lost but we know here that we can hold out a long time with a sequence of different treatments. At least I hope....
Love to all. I will post next week to tell you if I am in the TDM1 arm.
Michka

[sarah]

Hello Michelle,
Thanks for updating us as others have stated there are other chemos as well but I know we will all be hoping with all our hearts that you are accepted in the TDM-1 side.
hope all is going well with your family.
Have you mentioned the itching to your doctor? I had terrible itching skin from the chemo and Herceptin, the best thing seemed to be calamine lotion for me but it does dry out the skin. None of the dermatologists I saw gave me anything (cortisone cream) that helped and eventually it got so bad I had an exzema like condition and sores. Can you take Benadryl or something like that? ask your doctor and maybe try the calamine lotion.
hugs and love
sarah

[Pray]

Michka, Please know I am always hoping and praying for you. I do hope you don't have to wait much longer.

Peace,

Nancy

[greenacres]

I'm so sorry about these results Michka...my heart goes out to you. I'm sure there are plenty of options available to you, this is the best place for support and I'm sure there are many, many people here who can offer you ideas and suggestions as to the next steps you could try to conquer this beast. I'm in tears for you, I'm so sorry. Stay strong as best you can and lean on your family and friends for support and encouragement. Hugs to you.