New Direction??

Please feel free to read, share your thoughts, your stories and connect with others!
justbreathe
Posts: 4
Joined: Thu Jun 22, 2017 10:01 am

New Direction??

Postby justbreathe » Wed Jul 12, 2017 6:47 am

My husband started out with a group of local doctors in the Cancer Institute in our area. Oncologist, Radiologist and a Surgeon that specializes in Colon/Rectal Cancer. In the beginning the surgeon felt that with Chemo and/or Radiation to shrink the tumor he could do the resection but where it was located there was a good chance he could end up with a colostomy for life. DH thought that sounded better than Cancer. After the first PET Scan showed the cancer had spread that was when Oncologist 1 said he was treatable not curable and my husband went for a second opinion.
Oncologist 2 (who was not associated with our local group of doctors) seemed optimistic that Chemo would shrink the tumors enough for surgery. After 12 rounds it worked on some of the small ones but the main tumor has doubled in size and the others are coming back. Now his thoughts are the same as Oncologist 1 - Treatable, not curable.
Oncologist 2 had a meeting with our Radiologist and the Surgeon that was originally going to do the resection and DH was under the impression that his new treatment (radiation/Xeloda) was still going to end with surgery,
Yesterday after treatment he saw the Radiologist and was told that instead of 30 sessions they were only doing 14. He said this was only to make him more comfortable. There won't be any surgery. The surgeons office never called back after the meeting to set up an apt.
I understand my husband is ill and this is not going to go away, but what I don't understand is, why is it that 3 professional Cancer Specialist can't come up with a way to look you in the eyes and tell you what is really going on instead of looking at the floor and talking in circles.

DH will probably have me call somewhere for a third opinion. And if he ask me to I will. Not because I think his doctors are wrong but because he wants to find someone that will give him the answer he wants to hear. And Because I am a wife of a husband with Stage IV Freaking Cancer.
DH @ 52
DX: 6/21/ 2016
Stage IV RC Lower rectum
Mets in lung and liver
Inoperable
Chemo 12 rounds 11/14/2016 - 05/17/2017 (shrinkage in tumors lungs and liver)
Folfox 6 : Oxaliplatin ;Leucovorin ; 5-FU (fluorouracil)
Rad/Chemo 06/16/2017(Xeloda 14 treatments to make him more comfortable) Ongoing

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: New Direction??

Postby ACPdiddy » Wed Jul 12, 2017 10:30 am

You're a trooper. That maybe surgery, no surgery roller coaster is the worst.
Hang in there. Get that third opinion. Sloane Kettering or one of the biggest of big hospitals. Maybe someone can combine a couple different treatment modes to get to no evidence of disease.
Start a different chemo regimen, see if that works better for getting to surgery.
This disease is so unpredictable and research is coming up with new treatments all the time.
Stay strong.

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: New Direction??

Postby ACPdiddy » Wed Jul 12, 2017 11:55 am

Also, quick thoughts on colostomy. I was horrified at the thought of a colostomy before I woke up from an emergency surgery with a colostomy of my own. I've had it a year and a half now and I rarely think about it. How inconvenient/unpleasant is it? On a scale of 0-10, where wearing glasses is a 1, I'd say colostomy is a 2. Maybe 2-1/2.

rp1954
Posts: 1174
Joined: Mon Jun 13, 2011 1:13 am

Re: New Direction??

Postby rp1954 » Wed Jul 12, 2017 1:07 pm

There are several problems that you've run into:
1. A presumption of futility of actions and treatments; they never get started on many small, productive steps.
2. A lack of coordinated, timely, integrated multimodal actions
3. A lack of simple chemistries and optimization to stop new mets and to control heterogeneous mets.

For multimodal efforts, the dissemination and extent of disease matters but not as much commonly assumed. Whether an area can be cleared and preserved from new mets is important. And then another.

We cut this Gordian knot several ways.
First, we adapted immunological, generic, targetable and supportive therapies - off-label drugs and supplements like Life Extension and similar approaches
We expanded blood testing by simple add ons and better stabilized the blood results with metronomic chemo, supplements and IV vitamin C.
We got surgery not commonly practiced, but possible by looking and asking around. It turned out a foreign trained doctor had training and experience.
We used many therapeutic components up to the day before surgery and immediately after to limit metastasis, and speed recovery.

This is how some could tackle multiple met sites. We did the coordinating ourselves and used medical facilities on a simple task basis. This allows you to recover initiative and treat obstructions more like the internet does - to flow around nonfunctional parts of the medical network.

Then focus on solutions to any given task whether by cost effectiveness, simple availability or world class techniques. Review or interview as many doctors as needed, even internationally. Lungs the Rolle method is most adanced, ALPPS is an advanced liver resection technique.

Metronomic (daily) immunochemo is a flexible anti metastatic approach that preserved operability in the face of heterogeneous disease and multiple sites for us.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

mozart13
Posts: 74
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: New Direction??

Postby mozart13 » Wed Jul 12, 2017 5:35 pm

I can talk about chemo/rad, it helped me, most people get down staged, so the operation is possible, than once that is behind, deal with lungs and liver.
Temporary or permanent bag, I wouldnt be vorying about that now, what I can see from posts, permanent bag might be better choice, people that have it complain less, people that have reversal option seem to have far more complains and issuess.

In your husbands case colostomy might not be bad option, it might be hard to deal with reversal at same time, as he will have to deal with lungs and liver.

One problem at time, stay focused and positive, dont read to much into studies, treatments are improving, we might even have vaccine in couple of years, your oncologists look at floor, its not easy job to deliver that kind of news.
Second opinion is good, different eyes see different things, but dont delay treatment, time is critical, cancer is like snow ball.
Just my opinion.
Good luck to your husband and you!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

bbc12
Posts: 2
Joined: Thu Jul 13, 2017 6:05 am

Re: New Direction??

Postby bbc12 » Thu Jul 13, 2017 7:40 am

Hi,
So sorry that you are going through all this. By way of background, I was treated for stage 3 n2 m0 rectal cancer (conventional treatments) and am recently NED. During my treatment, I read a lot (maybe all) of the posts on this board about rectal cancer --- (I could not sleep a lot of nights during treatment).
1) As someone else said above, a new set of eyes can be a good thing -- especially if your current set of eyes sees no more options – it’s certainly it worth double checking such a position.

2) I don’t know the size of the cancer center your husband has been being treated at but given the circumstances the general wisdom I have gathered from this board is that this new set of eyes would hopefully come from whatever the flagship cancer center is in your region ---- I would never underestimate the difficulty of traveling to a major cancer center while your husband is so ill, but if you read the stories on this board many who have had difficulty treating their cancer eventually have to leave their local physicians and go to the biggest cancer center in their areas to get treated.

3) Hopefully the tumor in your husband’s rectum will respond well to the chemoradiation. From what I have gathered reading about rectal cancer the primary tumor in the rectum can respond quite well to chemoradiation.

4) If you need / want to consider clinical trials there are two members of this board who curate at clinical trial finder --- the title of the thread is “NEW DK37 and MAIA MSS-CRC CLINICAL TRIAL FINDER!”

5) Also, there is a Facebook group called Colon Town that has subset groups for different types and stages of CRC, the groups are private so it takes a couple of days to join as you need to fill out the registration and then be admitted --- but you might be able to find some more information there.

Wishing you good luck and strength in this difficult time

User avatar
chrissyrice
Posts: 1150
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: New Direction??

Postby chrissyrice » Thu Jul 13, 2017 7:22 pm

I highly recommend Colontown on FB ... join the group for the Clinic and trial finding ...

I could not agree with you more about how doctors give cancer dx and not the whole down and dirty and then lift you up with the possibles and outcomes.

I was very lucky on my recurrence in August 2015 to Stage 4 that when I asked for a prognosis I was told the real deal for my tumor genetics and expected time. Nothing to benefit my current dx at that time and a recurrence in 2 to 3 years... Well we did scan and wait for 2 years and zap almost 2 years to the date a lymph node popped up on an ER visit for what I thought felt like a bowel obstruction.

So tomorrow I hope I can expect the results of my pet scan and prognosis in real terms... down and dirty. I don't want some kind of hero talk period... but will talk about what is new and possible avenues to explore or not ... this is my 3rd dance with cancer and I will die from it someday .... but NOT TODAY BIG C ... NOT TODAY!!
Dx 10-31-09 Surgery 12-1-09 Sigmoid Colon Stage IIIb; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin;12-16-2010 PET/CT Scan Cancer Free;7-05-2012 CT Scan NED 2 years;10-13-2013 NED 3 yrs; 08-01-2014 NED 4 yrs; 06-30-2015 Stage 4 iliac lymph node(s) 08-11-2015 Surgery 3 cm tumor and iliac artery graft done. Positive margins in the abdominal aorta, No chemo. 03-16-2016 CT Scan Stable,06-16-2016 CT Scan Stable,09-21-2016 CT Scan Stable,12-2016 Stable,03-31-17 Stable,
Recurrence 6-30-17

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: New Direction??

Postby Jacques » Fri Jul 14, 2017 12:32 am

chrissyrice wrote:I highly recommend Colontown on FB ... join the group for the Clinic and trial finding ...

Colontown

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56835&p=450005#p450005
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
How to Select a Surgeon
List of Forum Features
Colorectal Cancer Stages (TNM)

User avatar
Maia
Posts: 2415
Joined: Fri Aug 24, 2012 8:00 am

Re: New Direction??

Postby Maia » Sat Jul 15, 2017 5:08 pm

Hi, justbreathe. Sorry your husband is facing this --and you too.
If you don't mind, where are you, in which state? Of all the two consults you have made, which one was the more important centre you went?
Do you know if the doctors have ran any genetic testing over the tumor --things like KRAS, BRAF, or maybe were you told if he is MSS or MSI-high? It doesn't matter if you don't know right now, I'm just asking in case you have some inform there with those acronyms.
I read in other thread that he has mets in liver and lungs, plus the primary --colon--. Is that correct, is there disease somewhere else?
As others have said, each case is unique and even in difficult cases, remarkable responses are possible, that allow surgeries, and other treatments. Treatment is changing everyday, with more agents, like immunotherapies, that start to show results when it seemed impossible. So, yes... justbreath. Your screename is a very wise one. :)

justbreathe
Posts: 4
Joined: Thu Jun 22, 2017 10:01 am

Re: New Direction??

Postby justbreathe » Tue Jul 18, 2017 1:21 pm

Thank you everyone for your responses.
To answer some of your questions, I am in Florida.
I don't know much about the genetic testing but this is what I found in DH records KRAS/ NRAS MUTATION PANEL. This testing was done from Onc #1 when he was first dx. I'm not exactly sure what it means.
We will see the Onc on Wednesday. The Rad had another consultation with Onc and told him my DH felt they were giving up on him. They are going to team with Moffitt Cancer Institute in Tampa for possible new direction. Moffitt is the best for Colon/Rectal cancer in our area.
I know this is a long road with more to come. Most of you have been fighting this disease for many years. In a perfect world everyone would go into remission long enough for a Cure. Until then we just keep fighting and Just Breathe!
DH @ 52
DX: 6/21/ 2016
Stage IV RC Lower rectum
Mets in lung and liver
Inoperable
Chemo 12 rounds 11/14/2016 - 05/17/2017 (shrinkage in tumors lungs and liver)
Folfox 6 : Oxaliplatin ;Leucovorin ; 5-FU (fluorouracil)
Rad/Chemo 06/16/2017(Xeloda 14 treatments to make him more comfortable) Ongoing

User avatar
LPL
Posts: 282
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: New Direction??

Postby LPL » Tue Jul 18, 2017 5:24 pm

justbreathe wrote:Thank you everyone for your responses.
To answer some of your questions, I am in Florida.
I don't know much about the genetic testing but this is what I found in DH records KRAS/ NRAS MUTATION PANEL. This testing was done from Onc #1 when he was first dx. I'm not exactly sure what it means.
We will see the Onc on Wednesday. The Rad had another consultation with Onc and told him my DH felt they were giving up on him. They are going to team with Moffitt Cancer Institute in Tampa for possible new direction. Moffitt is the best for Colon/Rectal cancer in our area.
I know this is a long road with more to come. Most of you have been fighting this disease for many years. In a perfect world everyone would go into remission long enough for a Cure. Until then we just keep fighting and Just Breathe!

Good to hear that it sounds as your Rad doctor is 'fighting for you' ! That a new direction might be possible. I think you should ask at the Onc appointment for an explanation (& a copy) of the KRAS test result. As I understand it the result can be either KRAS wild or KRAS mutant. My DH result was KRAS mutant (G13D). Also ask if he is tested being MSI or MSS. The things that clever member Maia talked about. These are important things to know as I have learned here on Colon Club.

All the best to you & your husband.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Bing [Bot], Google [Bot], KathyLynn, sbrainbolt, susie0915 and 45 guests