bad news again..

[fullofbeans]

After waiting an extra 6 weeks from planned they finally scanned me today in view of operating on the left side (lung) this time..

Unfortunately there are more than 20 news mets and even a new met on the right side (which has been operated on) I saw the surgeon in the afternoon and he was reviewing the scan in front of me so I know it is right.. One of the tumour went from 0.5 to 2cm as an example of the growth we are dealing with.

So we will not be operating.. at least I will not be going through this painful op again. the number of mets had been stable this last year which is why we took the chance to operates.. I am still in quite a lot of pain from it and somewhat not improving..I am getting out of breath easily and was putting it down to recovering but it may not be that now it seems.

Seeing my oncologist on Friday. I read about post here like the one by jml and I simply do not know how they can cope and still sound great. Perhaps living alone with my dog and not having the support of a family does not help. I was planning a trip borrowing a camper van from a friend and was going to go with my dog round Europe (visit people and having friends joining me for bits) for after the 2nd op to have something nice to look forward and plan whilst recovering .. I really want to do that trip.. Looking at the TDM1 trials now that more are opening. Maybe that may buy me some time so I can still do it, I may have to be less enthusiastic in case I get worse during it.. F***ing cancer!

[KDR]

I am really sorry to read this news. But live by your credo, "Under no circumstances should you lose hope." Wishing you a successful new path to heatlh.
Warmly,
Karen

[CoolBreeze]

I'm sorry you got such bad news. But, you should plan your trip for sure. And, I know several women who got NED on TDM1 so a trial is a good idea.

[7andcounting]

I agree, Fullofbeans, do not lose hope. So often our setbacks are only temporary and then something comes along and smacks the cancer! jml's post is a great example of this. There really could be something that will work for you. I hope there is a TDM1 trial close to you. Hugs to you. Don't despair. We can be your family support system!

[norkdo]

Take care and do not give up! My thoughts are with you.

[Pray]

Gods blessings to you. Please know that you are in my prayers.

[KsGal]

Im so sorry you didn't receive the new you hoped for. I agree with you, damned cancer! as hard as it is sometimes, please try to keep the faith and stay positive. Sending lots of prayers and positive energy. The TDM1 trial could be just the magic bullet you have been looking for, we just never know until we try.

[Jackie07]

I'm sorry to hear the bad news. Perhaps you can invite your friends to come visit you instead? They can stay in the camper...

T-DM1 and other options should be available somewhere near you. Do talk to other doctors/hospitals for 2nd opinions. I'm sending you good vibes.

[Redwolf8812]

It seems like there are a lot of treatments that you haven't tried. Carry on!

[NEDenise]

FOB,
Such disappointing news :(
But, as others have said...there are so many good treatment options that you haven't had a chance to try yet. Please, consider getting 2nd and 3rd opinions about your next steps. You deserve the best treatment available!
And, once you and your docs decide on a new plan...I hope you get to take the trip you've been looking forward to. It sounds like such fun! And, you deserve it! I bet you're beautiful "puppy" would enjoy it too!

I'll be remembering you in my prayers, and hoping for happier news soon.
Sending hugs...
Denise

[schoolteacher]

fullofbeans,

I am so sorry. I hope you began to feel better from the operation. The trip sounds like a wonderful idea. Please let us know what the oncologist says on Friday. You are one of my heroes. I am waiting on Pertuzumab to be released or TDM1. Hope to hear from you soon.

Amelia

[greenacres]

I'm so sorry to read this! I check on you often because we have the same exact diagnosis in the beginning. Stay strong and know that we are all praying for you. I hope you begin to feel better from your surgery and let us know what your Dr. says. Sandra

[Sheila]

Stay strong and remember, this is but another hurdle on your journey....there are so many treatments out there for you yet...focus on strength and a new treatment to get you back so you CAN take that trip and really enjoy yourself....prayers and a big hug for you in this latest battle.

[snolan]

Sorry to hear the bad news. I agree with the others, take the trip it will help you clear your mind for the next challenge ahead. You need the support of your friends. Hope you can get in the trial.

[fullofbeans]

Thank you all for your good words. I had an appointment today at the trial centre already (i could just go with a GP ref to save time). It is run by a private hospital but will not have to pay because it's a trial. truth is it felt like black and white compared to my hospital in the uk(despite the fact that I am treated at a centre of excellence). Indeed they are running so efficiently and with concern for the patient that I have not yet encountered at my hospital, it felt good..

they are already planning to test other receptors so they can move fast into other trial in case tdm1 does not work/i don't get it..i.e. they are pro-active.

If I am accepted (they expect it should be ok has had lots of chemo but little radiation) is a 2 to 1 chance that i get tdm1 and treatment could start within 10 days.. also it is open label so i will know straight away what it I am getting.

You know my hospital was met to give me an appointment for tomorrow, i chased them today and still have not got an appointment confirmed.. they simply have not come back to me again..

Anyhow i think tdm1 is my best option right now so please please let's hope that when she press the button the randomising computer (God) is giving me that chance.

[BonnieR]

Stupid cancer! But the horizon is clearing up. Take the trip and keep the faith.

[mamma2louis]

My fingers and eyes are crossed for you....focus on taking that trip!

[Mary Anne in TX]

I agree with Bonnie. Keep the faith and take the trip.
My little dog is my bestest pal too. It is hard to do it alone sometimes, but I'd always just cry a bit, whine a bit and then be grateful for my little fur friend and the kindness of my clinic.
I'm a camper nut too. Sounds like a super fun adventure.
We're all pulling for ya! ma

[chrisy]

Getting bad news sucks, but see - windows are opening for you. Do not lose heart.

Chris

[bejuce]

I'll be praying that you'll get to be on TDMI or whatever other drug available that will bring you back to NED. YOU CAN DO IT!!!

[ElaineM]

Good luck with the new trial. I hope you get the T DM1 you are hoping to get. Remember Petuzamab and the actual T DM1 are getting closer to approval day by day.
Enjoy the trip if you are able to go. It will be great to roam around Europe and re connect with old friends or meet some new ones. Everybody needs a vacation and a change of scenery once in awhile, including cancer patients !!
I am keeping my fingers crossed for your success.
Take good care of yourself.

[caya]

I'm cheering for you too sweetie! I hope you get the TDM1 and that it knocks the cancer right out of you!

all the best
caya

[Laurel]

Hey, Beans, just saw this update and do not blame you one bit for being P. Off at Cancer! That said, I just feel there is something in the wings for you that will stabilize those lung mets. Maybe it's the TDM-1 trial or another one, but I just believe you will achieve NED again. Hang in there and I'd love to bum around Europe with ya in a van! Sounds like a blast. I think you will be able to do your Euro tour.

[chemteach]

Great words from many who know! Onward! Thoughts and prayers and good vibes headed your way.

[schoolteacher]

fullofbeans,

I am praying you get TDM1.

Amelia

[Joan M]

Keeping my fingers crossed that you get TDM1 and that it knocks out those nodules.

Joan

[Jean]

I am hoping you do get on the TDM1 trial.
Hang in...you have come so far. I am sorry you have not recovered as you wish. The trip sounds perfect and keep those plans if you can.

Keeping you in prayer and thought.
jean

[AlaskaAngel]

No one deserves that chance more than you, FOB.

AlaskaAngel

[Myra Lynn]

I'm for the trip, the trial, and mainly behind you getting what you need to fight this. I am sending all of my positive thoughts and hopes to you.