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