Full o beans, You are missed!

[Pray]

We haven't heard from you in a while and would love to hear how you are doing. I know lots of people like to take a break from this site to just enjoy life. I do pray that is what is going on with you. You are missed and we do hope to hear from you soon.

Gods blessings to you our friend.

Your friend,

Nancy

[NEDenise]

I agree! I miss you too FOB!
Hope all is well!
Love and a long distance hug,
Denise

[Mandamoo]

I'm chiming in too - miss you FOB.
xxx

[chrisy]

Me too! Hope you are doing ok

[Ellie F]

And me your fellow Brit!

Ellie

[Paula O]

Thinking of you, FOB! Hoping you are happy and well and doing lots of fun stuff!

Has anybody PMed her?

Paula

[Pray]

Yes, I know of a couple of people have pm her. I sure hope we hear from her and Krisvell soon.

[NEDenise]

Hi!
She PMed me in September and said she was
"stable-ish on TDM-1". She also said she'd be checking in here soon. I hope soon is really soon...we miss you FOB!
Denise

[Pray]

Please if anyone has talked to FOB we sure would like to know how she is doing.

[rhondalea]

Bumping this up.

Does anyone know how to contact her?

[Ellie F]

Full of Beans is in England but I don't have her address or phone number otherwise I would ring. I hope she chimes in soon
Ellie

[StephN]

I have an email address and sent a message to her almost 2 weeks ago, and no reply. She would be in contact with me from time to time.

Maybe Alaska Angel has something?

[AlaskaAngel]

Unfortunately, I don't have any address for her either, Steph. (I am away from Alaska currently and am plagued and perturbed because I don't have your contact info either.... but hope you are doing well despite the onslaught you have been dealing with.)

Fondly,

A.A.

[fullofbeans]

Thank you all.

I have been kicked off TDM1, but it kept me stable for 4 months or so and gave me the opportunity to travel. I bought a vw camper van and went round France with my dog for 2 months (all that organised in a busy few weeks, bought the van on Ebay) and I hardly have had internet access when travelling.

I came back to the UK on Thursday and had my scan results yesterday. I knew (since I was getting more and more breathless) but it was still hard to hear the word progression. I acted just as someone falling off a building and whislt passing people at the windows saying to them: until now all is fine..

what's next after TDM1..?

[mamacze]

Oh Honey, I am so sorry to hear the progression word; especially in your lungs. I know that breathless feeling and it ain't good.
I can't help but think if you get a genetic profile on a tumor biopsy it may open the door to targeted treatments or clinical trials.
Has your oncologist talked about that at all?
I just had it done here in CT at Yale (see link:
http://www.precipiodx.com/physicians_tumor_profiling.html ) and I thought the results were so helpful in directing future treatments.
Hang in there angel, I am sure you will get much support; we all know it takes a village. Please keep us posted. (and when you feel up to it; any adventure stories from your fun fun trip around France?!?)
lots of love,
Kim (from CT)

[NEDenise]

FOB! I missed you!
So glad to hear you were off having fun! What an adventure!

I'm sorry to hear about your new troubles, though. I'm certainly no expert on chemo cocktails...but I'm sure our resident experts will have some good suggestions.

I loved your falling from a building analogy. I know that feeling so well...but I've never heard it explained with such perfection. It made me chuckle too...and you KNOW how I love to laugh! A healthy sense of humor is a powerful weapon in my anti-cancer arsenal. Yours too, I think!

I hope you know, you'll be on my mind, and in my prayers as you search for that perfect combo to destroy those nasty cancer cells.
Love, and a big hug
Denise

[fullofbeans]

It was nice to read that post when I came back I needed support.

Kim Trip in france was lovely and got some sunshine and my pupster she was such a good little traveller not scared of anything but a terrible guard dog tho she only barks at dogs noise not people, makes for good night sleep for me. I visited friends and some cousins, and a friend joined me on my journey.
I also explored small tiny places in the mountains and filled my eyes with many beautiful places. The van I bought was from someone who had done it so well (he was a boat fitter, it was sold to a friend because he died of cancer and his mom needed money for the funeral..). The weather started to turn a week before I came back, I did not want to and felt like going further south but I knew that TDM1 was no longer working, so i came home..

[ElaineM]

I am glad to hear from you and happy you had a wonderful experience traveling around with your puppy in your camper, but I am sorry to hear T DM1 is no longer working for you. Hopefully you and your docs can try something else. Tumor profiling sounds like an excellent idea.

[Mandamoo]

I am soooo pleased to hear from you and happy to hear you have been having an adventure! I am sorry to hear the TDM1 is not working. You have tried some interesting things in the past - maybe getting some profiling done will be worthwhile but then there is the difficulty of accessing appropriate treatment - especially in the UK.
You are often in my thoughts. Sending you love.

[Paula O]

Welcome home, Full of Beans! :)

What a wonderful adventure you've been on--glad you made that happen.

Wishing you the very best and rooting for ya,

Paula

[BonnieR]

As the others have said, how terrific that you just took off like that on a fine adventure. Good on you! Refreshed and ready to battle on. Keep the faith.

[Ellie F]

Hi FOB
So pleased to hear from you now your back on British soil! Please let us know what next treatment wise.As I said before you would be welcome to stay with me if you need to come to my part of the world for treatment.
Hugs
Ellie

[Pray]

Fob, I'm so happy you chimed in. What a wonderful trip you were on. Its so important to take time to just enjoy life with all the beauty that is out there. Its so nice to hear you enjoyed it. Just as impotant you have come back to jump right back into the ring. I am hoping and praying the drug works better. Gods blessings to you. We all look forward to your posts and are here for you. Gods blessings to you my friend,

Peace,

Nancy

[phil]

So sorry to hear about the progression. glad you had a nice trip on the " Continent ". some who have had to stop t dm-1 have had positive after effects from the t dm-1 . some have used herc/tyk. after stopping t dm-1, , but you have tried that in past. but maybe it would work better after t dm-1's done some of the work ? some have tried other herc/combos like herc/navelbine -something the cancer hasnt seen. gemcitabine ? maybe pertuzumab if its available there ? Good Luck and God Bless

[chrisy]

Fob,
Glad you had the opportunity to have a lovely holiday...sorry you have to get back in the arena on a different horse. Let us mow what you decide, sounds like there are lots of options.

[fullofbeans]

Thank you for all the kind words and support I really needed it after the scan and my increasing breathing problem. Whilst on my trip I tried to forget the inevitable, I knew TDM1 never worked that great for me, I actually was the first one to have to leave the trial of the recruited people..

I am exploring options a super-lapatinib(next generationphase 1b) or a Androgene Receptor(phase1/2), the latest seems to have been tested mostly on prostate

Yes I really want to go again on a trip on a in the spring so I hope I find my magic combo..

some of you requested stories of the trip: Once I had to stop the van in the montain pass as it suddenly became too foggy. It was getting late anyway so I went to bed, soon to realise that the temperature was really really dropping. I was getting cold (no heating in a VW van) but then my dog for the first time burrowed a way in under the covers and lay against my stomach..we kept each other warm enough to sleep. I know it is nothing special but still for me it is a precious moment. The morning we discovered a beautiful scenerie and realised I was stopped at the peak and viewing point area. bless

A little bit more..

[StephN]

Hi -

Know you have been utilizing the good availability of the internet to you with your Sherlock hat on and magnifying glass out.

Looks like you have some interesting ideas to move ahead on.

Love the snuggly dog story. The landscape can change very fast in France as we know by experience from our driving trips.

Here is my VW camper van story.
In 1979 my hubby bought a VW Westphalia camper, picked it up at the factory in Frankfort, with his 3 teenagers in tow. They spent 6 weeks driving around France and Switzerland in that van. Now the van has been shipped to the boys in Texas and they STILL love it and use it. One of the more fun times is Halloween when it becomes a sort of haunted house and parked by the street where the kids get their candy.

Keep enjoying that versatile vehicle!