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New scans where do I go from here?

everclearpc82's picture
everclearpc82
Posts: 21
Joined: Jun 2012

Well got my new scans back and I don't know what to do.They show not only did my tumors grow but many more in my liver.I also am getting tumors under my skin around my stomach I find that weird.The ones in my lungs did shrink but my primary tumor in my rectum has grown and I had 26 rounds of radiation.I looked for trials but don't see any that match me.Just found out in June and they are getting worse rally fast and I have had a few different chemos.What to do?

herdizziness's picture
herdizziness
Posts: 3622
Joined: Apr 2010

If that isn't down right scary? They just approved I think two new drugs, one which is zaltrap, have you asked your onc about that? Hopefully either both new drugs or one will help slow the tumor growth and maybe even shrink them.
I'm so sorry you're in this position and will send a lot of positive thoughts towards a chemo being found that can help you out.
Hang in there dear, I wish I could say more to help,
Winter Marie

janie1
Posts: 753
Joined: Apr 2011

I'm so sorry to hear this. Didn't mean to ignore your post. I know this is so difficult. Don't know your entire situation, but I hope you have a good support system close to you. Even with that, it can feel so lonely......BUT you are NOT alone!!!! I'm pretty much out of the regular options.
I don't know where you are from.....but like Winter Marie, said.....are you able to try anything else?
I wish I could give you a big hug and sit with you and talk. I do a lot of praying, too, and it helps. I am praying for everyone here at CSN. As I have said many times, this seems more of a family, because we all understand.
((((( HUG ))))))

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

greetings.

sorry to read your news... but when you hear bad news from one oncologist... maybe it's time to get another opinion???

Maybe get to another cancer center with more experience with your speicific cancer?

MD Anderson or Sloan Kettering??
Others may chime in here, as I've read many suggest going to those two places.... or at least make the phone call to both of those places and tell them your story. Start at 9am tomorrow and see what kind of feedback they give you.

it's worth a shot and it doesn't cost you anything to make a phone call and ask for someone to talk to.

Push for a better answer than... "well, you have a rare cancer".
man... if the first line of defense hasn't worked... lets push them to get onto the second line of defense... and damn fast!!!

take control of this stuff... and push for better answers and another solution to try.

you can do it. It's time to get pissed off at Cancer and let these people know that you're the boss and that you plan to fight like hell.

and if they aren't the right doctors or the right cancer center... find another.
they'll understand.

you can do it.

go go go... fight fight fight fight.... scream scream scream and get them to listen!!!

I'm praying for you right now and will be all week.

Hugs

joe

annalexandria's picture
annalexandria
Posts: 2444
Joined: Oct 2011

It's horrible to get bad scan results, especially when your doctors aren't able to offer you some new ideas for treatment. I would 2nd Joe's idea about getting another opinion, especially if you can go to a NIH hospital, or something similar, where they have a lot of experience treating difficult cases. There are some new chemos out that may offer hope, or sometimes doctors may try combinations of drugs to get better results. I would also want a doc who is willing to look for clinical trials. I don't think I would have the expertise to know which trial is a good fit. Sending hugs and strength your way. Please keep us posted on how you're doing. Ann Alexandria

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

for you. i would get a second opinion.
hugs
judy

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Hello...I'm wondering what your onc has advised and if you've looked for another opinion? You definitely have a lot of scary stuff going on and I think I would suggest to talk to a couple of oncologist to hear more than one perspective. Also keep your food healthy to at least feed your body the nourishment it will need to stay as strong as possible. But hey if a burger is what makes the heart happy, I say yes to that too. Get on the phone tomorrow with those doc's!!

Gail

abackhou
Posts: 77
Joined: Jan 2012

Hi, sorry to hear of your situation. If it was me I would see my ONC and want to know what is going to be the treatment plan from here on, lets get going!!!! Also try and get on with your life the best way possible, don't let the cancer consume you as it will if you keep stressing about your future. Live for now.

Best wishes and hugs to you and I really hope you find the right answer.

Andrew

smokeyjoe
Posts: 1428
Joined: Feb 2011

I too have a little bump under my skin by my bellybutton, oncologist felt it, it's about the size of a pencil eraser, he said it's too solid to be a lympoma...he did not say what it was though. What chemo's have you had so far and for what length of time.

everclearpc82's picture
everclearpc82
Posts: 21
Joined: Jun 2012

Thank you everyone.I have been looking all morning for a new onc gotto fight all I can.

marbleotis's picture
marbleotis
Posts: 573
Joined: Mar 2012

I would consider Sloan (NY) or Cancer Treatment Centers of America. I discovered you really need to fight this cancer stuff and be your own advocate. The board is a great source of info. I questioned everything until I fully understood everything. I kept a notebook that I took with me to all appts and chemos. Please keep us posted on your progress. You will discover you CAN do this!

Annabelle41415's picture
Annabelle41415
Posts: 4550
Joined: Feb 2009

So sorry to hear your news. I'm glad that you are looking for a second opinion. Maybe they can show you a different direction. You don't ever want a doctor to give up on you or your situation. Wishing the best for you.

Kim

everclearpc82's picture
everclearpc82
Posts: 21
Joined: Jun 2012

I took oxoplatin(spelling is wrong but with me most of the time it is) f5u for three rounds then found out it was a different kind of cancer then i got on carboaplatin and doxcitieal for two rounds

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