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Disappointing Appointment

Chelsea71
Posts: 1154
Joined: Sep 2012

Steve and I went to Montreal yesterday to find out what is next for him in terms of treatment. Up until this point we have believed the cancer to be in the liver only. Hoping for a two stage resection. If not, TACE, Theraspheres or any number of interventional procedures would have pleased us. Apparently there are now spots on the lung. This is preventing them from doing surgery. He's had a total of 27 Folfiri. Clearly, it is no longer cutting it. This surgeon is sending us to a new oncologist in Montreal. The regular onc is in Ottawa. The new chemo will be Folfirinox - oxaliplatin, irenotecan, flourouacil and leucovorin. Doesn't that sound like fun! They want to hit it hard and get the tumors under control and then do a liver resection, "with a curative intent.". To me, to even mention the c word is crazy, bit I do like their attitude. In addition, they are doing a biopsy of the liver. A piece of the tumor will be injected into a mouse. Steve will have his own mouse which will carry his tumor. Lucky mouse. They will do in depth testing to determine which chemos are effective on this tumor. Ottawa has tested for the KRAS mutation, which he has. They want to test for BRAF, as well. They will resets for KRAS. Apparently the fact that the primary tumor had the mutation doesn't necessarily mean the metastasis will.

I noticed on his blood work that the calcium level is slightly elevated. This has me wondering if there is bone involvement. He has no symptoms of it. No one has brought it up, but it concerns me.

All in all, it was very disappointing. I always go into these appointments prepared for the worse. Steve is a very positive thinker. Always thinks everything will just work out. He is very disappointed. Expected to hear lots of shrinkage, let's operate.

Thanks for "listening".

Chelsea

jen2012
Posts: 1132
Joined: Aug 2012

Wow these boards are weird today!   I keep trying to post and get knocked off. 

I'm sorry to hear about the appt.

Just keep listening to that cure word and let the doctors do their thing.  I know how stressed and anxious you are feeling, but lets keep hoping for the best.  Do some googling and ask about the liver biopsy - I think I remember reading that many recommend against them...

DAMN!  I could have gotten Steve a mouse for free - one of five, he could have taken his pick!  I bet their mouse will cost top dollar.

Hugs Chels!

Chelsea71
Posts: 1154
Joined: Sep 2012

Hey Jen. Ha ha. Steve and I have had many laughs over the mouse thing. He has named it Bravo. Sorry to hear your still wrestling with the mouse situation.

As for the liver biopsy, I did inquire about the risk of seeding. We weighed it out. They say it's less risky for him due to The HIPEC surgery that he's had. (No peritoneal membrane etc).

Thanks and good luck with those mice.

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

Hi Chels:)

I'm disappointed right along with you.  Steve has taken a harsh beating and I was optimistic as well that some kind of surgical intervention would be done.

This is hard news.....I went from High to Low in a complete free-fall with your update.  Just saddens me to see people I care about getting hurt so badly when they are trying so hard.  Makes my stomach tie up in knots.

That's a tough combo of chemo alright...I know that TaraHK did this one I believe and experienced some positive response, but I don't want to speak for her. 

Your guy is hard as nails and I so much hope that this new plan will yield the expected results this time:)  You both deserve some good news!

For what it's worth, give Steve my best....we're in your corner and wish we could do more.

It's just so upsetting to watch all of us having to suffer so much. 

I'm just about to finish up this post and was higher than a kite.....then I read the reality of what's happening to my friends and want to just hit the Delete key on what I wrote.  It just seems so not important anymore...

Glad to be here 'listening' with you...

wolfen's picture
wolfen
Posts: 1128
Joined: Apr 2009

Chelsea,

So sorry for this latest news. Let's just believe that the liver surgery is "on hold" and as soon as these pesky lung mets are under control, the surgery will be "on" again. The dang road just seems to be filled with so many boulders.

Wishing you both the strength to keep climbing over the boulders and onto a clear highway of success.

Luv,

Wolfen

Chelsea71
Posts: 1154
Joined: Sep 2012

Thanks Wolfen. Nice to hear from you. Hope all is going as well as can be expected in your life. Nice of you to be thinking of others while your dealing with you own grief.

Chelsea

Chelsea71
Posts: 1154
Joined: Sep 2012

Craig,

I think you took the news as hard as Steve and I. I am starting to become really familiar with that air being sucked out of the room feeling. I have acquired numerous new skills over the past two years. For example, I can determine the tone of the appointment within three seconds of walking into the doctors office. There seems to have been so much bad news lately. But I have also learned that as bad as things seem, they can always be worse. Just focusing on the positives right now.

Still so happy about your great news. How nice for someone so talented to work so hard and finally be recognized for their efforts. Take that Dr. Phil.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Very interested in this information about KRAS not necessarily being the same on the matastases as it is on the primary tumor as I have never heard that before.  I will ask my oncologist about this when I see her on June 20th.  In fact, I think I will e-mail her NP right now and ask about this.  Was this the same with BRAF, or did he just never get BRAF testing done on the primary?  Very interested to hear more...

Tedd

Chelsea71
Posts: 1154
Joined: Sep 2012

When Steve was diagnosed two years ago they tested for KRAS but not BRAF.  If he tests positive for BRAF the anti egfr drugs may be effective, after all. They are now testing a piece of the metastasized tumor (liver) for both mutations.  But even if they had already tested the primary for BRAF, they would still retest the met as it could be a completely different genetic makeup.  Interting, isn't it?  I knew about the first part but this was the first I had heard of there being any benefit to testing metastasis.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

My primary tumor was KRAS mutant, BRAF wild-type, according to the info I have.  They biopsied some peritoneal mets, but all I know about them is that they were confirmed to be adenocarcinoma and thus were mets from the colon tumor and not a different type of cancer.  I will have to ask my oncologist about all of this in more detail, as it could be very important with regard to treatment options.  Thank you so much for this information.  It could literally be a life-saver, or at least a life-extender....

Tedd

coloCan
Posts: 1826
Joined: Oct 2009

liver mets are genetically different,which would imply mets elsewhere would differ too. PIK3CA should also be tested for. Further, tho i may be wrong here, i recall reading that if KRAS mutant,you won'tbe BRAF mutant and vice versa...

http://clincancerres.aacrjournals.org/content/early/2012/01/17/1078-0432.CCR-11-1965.abstract

Chelsea71
Posts: 1154
Joined: Sep 2012

Thanks Steve.

renw's picture
renw
Posts: 284
Joined: Jan 2013

chances of both kras and braf mutations being present are statustically low, but they are not mutually exclusive. I had this argument with one of my oncs and eventually dug up the data and I got my braf test,despite being a kras mutant. :)

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am sorry...but at least it should like you have a plan and they are hopeful.  Does that chemo cocktail come with one of those little umbrellas that they usually put I tropical drinks?

alex

Chelsea71
Posts: 1154
Joined: Sep 2012

Alex

Ha ha, yeah doesn't that sound like a delicious cocktail. Lol. A solid plan in place does help.

Thanks
Chelsea

annalexandria's picture
annalexandria
Posts: 2024
Joined: Oct 2011

I've had a couple of these "worse than expected" scans, and it sucks.  I guess the one thing I would say is that it sounds like you have a great team who are not giving up on Steve, and in my experience with doctors the "c" word doesn't get thrown around lightly.  If they think there is still hope for a cure for Steve, I would try to put trust in that for now, as best you can.  It's not easy, I know.  Sending strength your way~AA

Chelsea71
Posts: 1154
Joined: Sep 2012

Thanks Ann. I don't think there is a hope in hell of Steve being cured. The Ottawa team would say that it is highly inappropriate for Montreal to mention cure. But this is why we prefer Montreal. They aim high. I love their attitude and fighting spirit.

Annabelle41415's picture
Annabelle41415
Posts: 4112
Joined: Feb 2009

Sorry you didn't get better news.  I'm hoping that his new treatment works better for him and his next scan shows a big improvement.

Kim

Chelsea71
Posts: 1154
Joined: Sep 2012

I hope so too Kim. The side effects should be quite brutal. Hopefully it will pay off with good results.

maglets's picture
maglets
Posts: 2389
Joined: Jun 2006

ah so so sorry about those results Chelsea.....indeed i know you must have hoping for so much more.  I do agree with the thinking that the cure word is still wonderful .....glad it is still floating around the room.  Sorry too that you now have this added to Montreal ....what a blessing to have fresh opportunities though.....

 

sending love to you both, mags

Chelsea71
Posts: 1154
Joined: Sep 2012

Thanks Mags. It is nice to have a fresh team with fresh ideas. Steve is worried about hurting the feelings of the old onc. I have told him, she is not our BFF. This is not personal. These are life and death decisions. We have to go with who we feel will provide the best options. I do get what he is saying as we do have a good rapport with the current onc. But, overall we are comfortable with the idea of moving on.

Chels

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I found a 2011 paper where they looked at 305 cases from patients that they had been able to biopsy bot the primary colon tumor site and the liver, and the results are below:

197/305 were KRAS wild type at both sites

108/305 had a KRAS mutation at one or both sites

5 had KRAS mutant at primary and KRAS wild type in liver

1 had KRAS wild type at primary and KRAS mutant in liver

5 had a different KRAS mutation between primary and liver site

In summary, there is only about a 3.6% chance of having a different KRAS at the primary site and the liver (they didn't look at lung or peritoneum).  Wish the chances were better....

Tedd

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Well, my oncologist at NW has agreed that it might make sense to test my mets for KRAS and BRAF, so now I just have to hope they kept enough of the omental tumors that they did biopsy (to make sure they were colon cancer) to do the testing....

Tedd

Nana b's picture
Nana b
Posts: 2648
Joined: May 2009

I wish him well.   Take care. 

Chelsea71
Posts: 1154
Joined: Sep 2012

Good luck Tedd. Hope it works out. Would be nice to have some new options. Sure shows that we have to do our homework. Can't just sit back and assume the onc are doing all that they can.

renw's picture
renw
Posts: 284
Joined: Jan 2013

If you are game to try new options, I just came across one. Daily IV of a sugar substitute. It is taken up by cancer cells just like glucose, but can not be used for energy eventually killing the cancer cell. Becomes more effective when combined with insulin after the IV. I will have more info next month, but I suspect that it is 3-bromoperuvate. The doc claims to have cured 2 patients who were classed as incurable one after 3 months of treatment, the other needed 11. but as with everything, proper studies are lacking so who knows.

Chelsea71
Posts: 1154
Joined: Sep 2012

Sounds interesting. Yes, we are interested in trying new options, at this point. More info would be great. Thanks a lot.

coloCan
Posts: 1826
Joined: Oct 2009
PhillieG's picture
PhillieG
Posts: 4658
Joined: May 2005

I wish you folks got better news but it's pretty cool that they are using a mouse as a guinea pig so to speak. Being able to test treatments for effectiveness seems to me to be a positive step in the right direction... The roller coaster gets old, I understand how you folks must feel

fatbob2010's picture
fatbob2010
Posts: 328
Joined: May 2012

Sad to hear the news, no sadder then you to be sure.  Most of all thanks for sharing with us.  

Sudance said it best I think.  I hate to try and speak for everyone.  However, for me, it is hard to accept that this could be happening.  For the two of your it must be especially hard after so much hard and dedicated effort.  

Hugs and hope that there is a "Cure" in the future.

Art

Chelsea71
Posts: 1154
Joined: Sep 2012

Wow! I wasn't expecting so many responses to my post. Thank you so much for all your kind words.

The positive side of all this is that Steve will now be treated at a new hospital by a new oncologist. He will now be treated in our neighboring province where they seem to take a more aggressive approach to cancer treatment. I couldn't help but be impressed by this whole mouse idea. Hopefully it will work out. It is very important when doing the biopsy that they extract a piece of the tumor that contains active cancer cells. Anyways, I really like this hospital (McGill Health Care Centre) and I like the team of doctors.

Steve seems to be feeling better about it all. He was pretty discouraged the first couple days after learning about the progression. Talking about not renewing his magazine subscriptions etc.... It was upsetting to see him in this state of mind. He has always been so positive. I do worry about the Folfirinox. Mostly because of the Oxilaplatin. He plays the guitar and puts together model planes and has many other activities that involve fine motor
skills. These hobbies keep him sane and occupy a lot of his time. So I am
worried about how the neuropathy will affect his quality of life. We booked a trip to Vegas. We leave on Wednesday. Going all out. The helicopter ride over the Grand Canyon, Crisscross Angel, Cirque de Soleil etc... It may be a while before he feels well enough to do a trip like this. I feel that we just can't put these things off anymore.

Thanks again to everybody for the support. Don't know what I'd do without you guys.

Chelsea

jen2012
Posts: 1132
Joined: Aug 2012

i"m glad that Steve is feeling better about things.  It sucks having this stuff hang over your head.   Seems like he is a fighter though, so I hope between his determination, the doctors skills and Bravo's bravery you quickly see better days.

NICE vacation plans!  So happy that you guys are doing something fun.  Enjoy it!!

herdizziness's picture
herdizziness
Posts: 3328
Joined: Apr 2010

That's right, go to Vegas and you two have a blast!!! The helicopter ride and all sound like fun, and by golly I think you both need a lot of that right now.

His cocktail sounds like quite the mix, I glad he's strong and can handle it, with you beside him, helping him, he'll do fine I'm sure.

And his own mouse! That's so very cool that they are going so far in helping to find out more about his tumors. I just love that they can give more hope and are able to go the extra mile!

I know you feel disappointed in the outcome of the visit, but I think they are going to be trying very hard and I'm glad that you have found a team that is aggressive and that you both like.

When in Vegas forget about the cancer and just enjoy the heck out of your trip, I'm so glad you are going.

Winter Marie

LindaK.
Posts: 247
Joined: Apr 2013

Have a blast, sounds like an amazing trip!  My husband and I went there for our 25th anniversary and had the trip of a lifetime, so glad we have those memories.  Enjoy all the shows, scenery inside and out, it's beautiful there.

Enjoy, enjoy, enjoy...

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

Sorry you received this challenging news but I am glad that you have a plan in place.  I keep your family in my thoughts.

Enjoy Vegas.  What a city!  Hopefully you will see Cirque du Soleil "O".  It's been years since I saw it but I can still see the images in my mind and hear the music in my ear.  Loved it.

Amy

Chelsea71
Posts: 1154
Joined: Sep 2012

What great timing. We were just discussing which Cirque du Soleil to see. Based on your recommendation we will see "O". Steve is now ordering the tickets. Thanks for the tip.

Chelsea

LivinginNH's picture
LivinginNH
Posts: 1217
Joined: Apr 2010

Hi Chels,

So nice to hear that you're going on vacation!  It's just what you both need, fun, relaxation and some one on one time.  Very happy for you!   :)

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Chelsea -I dont post as much as I'd like to but want you to know I am thinking of you and your husband.
You are so supportive, caring and knowledgeable. I was hoping to hear he could get therapy or sir spheres treatment.
I pray for all on these boards and my support group.
Just wanted to offer support and understand the ups and downs of this disease.
Sincerely. Barb

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