Wives of husbands with Stage IV Colon Freaking Cancer

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ronswife
Posts: 132
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Thu Mar 09, 2017 6:07 am

inorganic8 wrote:Hi,

This is my first post here. My husband was diagnosed with stage IV CRC at the end of January. He has mets to the peritoneum wall, the omentum, and maybe the liver. The liver mets seem to be on the surface and may actually be on the peritoneum and just crushed up against the liver. He has started Folfirinox and has had two treatments. He has tolerated them reasonably well. He is being treated at the Moffitt Cancer Center. We have seen two doctors there, one oncologist and one surgeon. His cancer is currently inoperable. The oncologist wrote him off at our first consultation and said the best we could expect with the chemo was 2 to 3 years. The surgeon is more optimistic.

My husband is 42 years old. Other than this cancer thing, he's very healthy. Great blood work, some extra weight, gets a decent amount of exercise. There's hope, right? Will these black balls of anxiety in our stomachs ever let up?

One day at a time... one day at a time... one day at a time...


Why is your husband's cancer inoperable, if the liver mets seemed to be on the surface?

The VERY best to him and I am praying for both of you! I lost my Ron on 12/29/16.

:)
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

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LPL
Posts: 132
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Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Mar 14, 2017 6:07 pm

inorganic8 wrote:
LPL,
HIPEC is a possibility. There is a surgeon at Moffitt who performs the procedure. Not sure how insurance will treat it, but we'll cross that bridge when we come to it. Our current surgeon has spoken with the resident HIPEC expert and they have agreed that my husband may be eligible for a tag-team surgery between the two of them. I understand there are risks associated with the procedure and their is some controversy, still, my husband is hoping to eventually pursue this.


It does sound like your surgeon is having a plan for your husband and that a surgery can be a reality for him :)
I was wondering if you saw member SarahS's post viewtopic.php?f=1&t=57469
It sounds like both your husbands are recently diagnosed at the same age, stage IV, and both having perituneum mets.

Hoping your husband's chemo is going well and that he is still tolerating the chemo without having too many side effects.
How are You doing with the 'black balls of anxiety' ? I hope they are shrinking ! I have some that are growing a little now because of an upcoming CT Scan and blood tests that hubby will have in a couple of weeks.

All the best to you !
One day at a time
/LPL
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

SarahS
Posts: 15
Joined: Sat Mar 11, 2017 12:44 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Tue Mar 14, 2017 7:44 pm

Hello LPL, hello everyone

You are correct my husband and inorganic's have a very similar situation.
While it is comforting to find other people in the same situation , it saddens me just how prevalent this is becoming in younger people.
This board has been a great comfort to me ever since my husbands diagnosis, where I discovered it whilst sitting in his room waiting for him to come out of surgery
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23

mhf1986
Posts: 9
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Tue Mar 14, 2017 8:16 pm

inorganic8 wrote:Hi,

This is my first post here. My husband was diagnosed with stage IV CRC at the end of January. He has mets to the peritoneum wall, the omentum, and maybe the liver. The liver mets seem to be on the surface and may actually be on the peritoneum and just crushed up against the liver. He has started Folfirinox and has had two treatments. He has tolerated them reasonably well. He is being treated at the Moffitt Cancer Center. We have seen two doctors there, one oncologist and one surgeon. His cancer is currently inoperable. The oncologist wrote him off at our first consultation and said the best we could expect with the chemo was 2 to 3 years. The surgeon is more optimistic.

My husband is 42 years old. Other than this cancer thing, he's very healthy. Great blood work, some extra weight, gets a decent amount of exercise. There's hope, right? Will these black balls of anxiety in our stomachs ever let up?

One day at a time... one day at a time... one day at a time...


Saying hello and sending you hugs...we are in similar situation and similar timing. Oncologist said inoperable because he believes if they can't get at all, there's no point in going in so enjoy the next 2-3 years on chemo. I find that odd, why not reduce the tumor burden? Why do some many doctors just waive their hands and send us home to cry? We haven't seen a surgeon. Since DH is responding well to FOLFOX, we are going to continue that for now. If the tumors in the liver continue to shrink and the ascites continue to shrink, I'm going to bring up surgery again. Or HAI or HIPEC. Or a new oncologist. or SOMETHING.

Melissa
Caregiver to DH, diagnosed age 50, mets to liver, ascites near stomach
10/16: hemicolectomy, colostomy, liver biopsy, CEA 114
11/16: FOLFOX started, Avastian added 12/16
2/17: CT scan shows at least 1 tumor shrinking, CEA down to 31
4/17: CEA down to 11.3, blood pressure medicine added

aussie.laura
Posts: 1
Joined: Wed Mar 15, 2017 7:34 am

Greetings from Australia

Postby aussie.laura » Wed Mar 15, 2017 8:46 am

Hello every1,
It is almost a matter of "copy and paste" with almost everything is been talked about here. :(
I am a newbie in the forum. I live in Brisbane, Australia.
A few weeks ago, we went for a drive to the sunshine coast. Russ only drove for 35 minutes and he couldn't keep on going. His energy levels are very low. Anyway, I took over and hooked my phone to the Bluetooth of the car and of we went listening to Pandora radio. There were a few songs playing that i needed to pretend having a sneeze attack only because I was containing my tears. I'm keeping a
stoic and positive attitude when I'm with Russ, but I'm truly scared to death. I can't lose him and I don't know if this kind of thing ever goes into remission. The doctors are just telling us that it's a bad cancer and that they'll treat it aggressively with chemo (and hopefully, a new drug that is supposed to shut down receptors on colon tumors...
I'm honestly not sure how to manage my emotions but like I said before, in front of him, I look strong.
I hate the way that our lives have changed. I hate the thought of losing him. I hate the thought of feeling empty and seeing my life without a purpose if I lose him. I hate the fact that I can't do anything for the cancer to go away.
Once, the purpose of my existence was my son. Waking up every morning and being thankful for the joy of motherhood. Now he's building his own life and I enjoy every day seeing him doing what he loves and spreading kindness with that gorgeous smile of his... Since he left the nest, my focus turned to be the best partner that I could to my absolutely perfect man.
Our pretty much "perfect" life went to an unexpected grey cloud where I can see the sun only because I HAVE to. I'm terribly scared. I'm terribly sad. I can't find the answers I need. This is to me like a punishment. I wish I could explain it better... I'm so sorry for the frustrating post but I need to get it out.
Now on the medical side of things:
My husband was diagnosed with stage IV CRC the 4th of August 2016. He was operated a few days after diagnosis and a large tumor was removed from the colon. He had 80% blockage and he had a port installed in early September last year…
He has mets to the peritoneum wall, and the liver. He waited 6 weeks and started with chemo (fluorouracil 5-FU, avastin combo). After 2 months on this, Pet scan showed mets on the liver. They changed chemo to Eurbitux, which apparently works for cancers with certain gene mutations.
Today was the last chemo = eurbitux combo before test and scans. If everything is working as it should, will be another 4 months on this regime. However, Eurbitux will be something that he will have for the rest of his life.
Russell is 53 years old. He received the “Free test” sent by the government when he reached 50 but completely refused to "poo in a tube" and threw the test in the bin... 2 and half years later he was diagnosed with stage IV. FML!!!
Caring for him is an emotional challenge...I have good days, bad days and everything in between. Sometimes I need just to say: "I am at the edge of tears, please talk to me".

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LPL
Posts: 132
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu Mar 16, 2017 10:19 pm

Hi Laura in Australia,

It is very good that you found 'us', that you found Colon Club. This is such a good place to 'not feel alone', to get support, kindness, and strength from sharing/hearing of others stories & also hope of remission! We can post our frustration here and others understand!

I am so sorry your husband has gotten this cancer diagnose and that your world as you knew it has been turned 'upside down'. We are many here who know exactly what you mean when you describe the grey cloud and feeling So scared and lost. I remember (screaming - alone in our house) wondering what my hubby (and I) had done wrong to deserve this.

Let me say one thing before I continue writing - I understand how you might feel about the free test that was not done... but my husband, he did do the "free tests" and he never got any result that recommended further tests, like a colonoscopy. As I understand it these tests are unfortunately not so reliable. My hubby's 1st symptom was a total block that needed an emergency surgery, a colostomi, because the surgeon was afraid that his colon would brake..

It sounds as your husband have good Doctors who are going to treat aggressively and I hope you will get good news on the upcoming test and scans. Members here write about "scanxiety".. mine is building up (tests at end of March) can you be feeling that scanxiety too?

What can we as caregivers do?
Personally, to be able to 'help', I needed to read, read and read to try to understand this 'new language'. Make sure we got our own copies of all of hubby's test results. Questions to the Doctors (unfortunately not all are great communicators).
One thing that sort of helped me see what questions to ask was seeing here on Colon Club what was good to have in the signature.
You said: "I can't find the answers I need", do you mean via reading or asking?

I hope your coming days will be good days and if not - know you can post about it here. Your son sounds like a lovely person that can create good feelings. Maybe hard to share all your emotions with him? At least that is my experience with my kids, I do not want them to worry too much..

All the best to you Laura !
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

ronswife
Posts: 132
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Fri Mar 17, 2017 6:07 am

Laura,

I agree with LPL's post. Everything you said rang really true for me. I did lose my precious Ron to stage 4 colon cancer on 12/29/16.

Since then it has been very hard coping. His funeral was 1/3/17 and I am finally completing the mailings of the funeral thank you cards.

Praying for you. Hang in there honey!

:(
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

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LPL
Posts: 132
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Mar 28, 2017 5:53 pm

Hi All,

I would like to share som Good News.
Yesterday my DH had his 1st CT Scan after having had all the chemo (12) that was prescribed for him. It was 4 chemo before his liver mets surgery and 8 after. His Onc was pleased and said that hubby now has a "vacation" for 3 month and then it will be check up blood tests and an ultrasound. The actual CT Scan report paper said: NED :D
We are Very Happy !
It is of course a 'NED for now' ... and I will start doing a lot of reading on how to best help him/his body to stay NED.

Hubby had some blood tests a few days before this CT, some results where a bit odd/not so good, but maybe? the chemo caused (a bit of) it... I shared my worries about that in this thread. https://coloncancersupport.colonclub.co ... 59#p454059

How are you all doing?
Wishing All of you the best ! /LPL
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

ronswife
Posts: 132
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Tue Mar 28, 2017 6:14 pm

This is GREAT news LPL! Praying that he STAYS NED!

:D
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

User avatar
LPL
Posts: 132
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu Mar 30, 2017 4:10 pm

Dear ronswife,
Thank You So much for your good wishes !
I'm so impressed that you have the strength to be glad for others, even though you must still be in shock having lost Ron.
I'm so sorry for your loss! I hope you're getting some good days going forward - one day at a time.
Wishing all the best for you !

There is one thing I would like to ask You ronswife and other caregivers:
Am I unusual in feeling/experiencing this?
When hubby & I go to appointments, meetings with his Oncologist, I have a Lot of questions that I can NOT ask !
Because...
My hubby have not (to my knowledge) asked/searched information about the stage/(prognosis) of his colon cancer.
He has misunderstood at times what was said and I have explained to him without sounding depressing. For example he thought having (only..) 2/9 lymphnodes positiv for cancer was like being at a #2 on a scale of 9. It is my feeling that he is not asking questions or looking for answers (on line) because he does not want to know. (It is what it is..). He is an intelligent person so it is not like he doesn't know how to get information. He just trust the Doctors and that they are doing what is best for him.
I know him(!) and I want and need to respect how he is handling his illness. He is however grateful that I wanted him to get a 2nd opinion, which is why he is treated in another hospital then where he 1st was diagnosed.
I'm sure other caregivers have felt alone at times - I just wonder how other caregivers have handled things like this?
Being a member of Colon Club has been and is for sure a lifesaver for me, a safe place to ask questions and learn.

Kind regards and Hugs
LPL
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

SarahS
Posts: 15
Joined: Sat Mar 11, 2017 12:44 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Thu Mar 30, 2017 4:18 pm

LPL

I Know exactly what you mean, my husband is intelligent and spends a huge amount of time online researching his interests and the latest technological advances but when it comes to his cancer he just doesn't want to know, or rather seems to be happy for me to be the one that researches like crazy.
I think perhaps it's just enough for him to be physically dealing with the cancer and he just doesn't want/can't handle the burden of dealing with all the research as well.
I think he is quite possibly blissfully ignorant about certain aspects of his cancer and I honestly believe that that is no bad thing, I think that allows him to maintain a degree of optimism that keeps him going and just take one day at a time.
It's not my nature to just leave things to be, so I spend hours looking into immunotherapy, clinical trials, other peoples experiences and supplements . At times it does feel like a load I have to carry by myself but I like to think of him using all his energy to fight those stupid tumors while I do the mental stuff.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23

User avatar
LPL
Posts: 132
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu Mar 30, 2017 5:06 pm

Oh SarahS, Thank You !!
When you described your husband - it was like reading about mine !
And the way you are handling it sound exactly like me :wink:
Again Thank you so much for replying - I do not feel alone now..
Best of Luck in finding the best treatment for your hubby !!
It must be very positiv to see his CEA going down so much :)
Kind Regards /LPL
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

inorganic8
Posts: 9
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Mon Apr 17, 2017 12:40 pm

Hello Friends,

I have some good news to share. DH has had 5 treatments of Folfirinox. We met our oncologist today to go over the results. Tumors are clearly shrinking. He had one large and two small mets on his liver (possibly on the surface.) The two small ones have completely disappeared.The peritoneal cancer has been reduced. The primary still has the same amount of uptake, but the onc thinks that is inflammation. He said he really doesn't think the mets would shrink and the primary be unaffected. So, DH will do 5 more rounds of Folfirinox. He's not excited about it, but we seem to really be making progress.

Now, a question: Let's say hypothetically, a tumor has an SUV of 10. If in a second scan, it has an SUV of 7, is that a 30 percent reduction in the tumor? Or does that just mean the tumor is less hypermetabolic and we really can't correlate those numbers to a linear response. I have not been able to find this anywhere and it may be a much more difficult question than it appears on the surface.

Thank you all for your prayers and support. I hope I can return some of that love. And ronswife, you have been through so much and here you are trying to comfort and advise the newbies. Thank you so much for your kindness. I don't know how you do it, but I am glad you are here, still interacting with us.

Kim
Wife to wonderful man with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
Folfirinox 2/8/17

ronswife
Posts: 132
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Mon Apr 17, 2017 9:09 pm

inorganic8 wrote:Hello Friends,

I have some good news to share. DH has had 5 treatments of Folfirinox. We met our oncologist today to go over the results. Tumors are clearly shrinking. He had one large and two small mets on his liver (possibly on the surface.) The two small ones have completely disappeared.The peritoneal cancer has been reduced. The primary still has the same amount of uptake, but the onc thinks that is inflammation. He said he really doesn't think the mets would shrink and the primary be unaffected. So, DH will do 5 more rounds of Folfirinox. He's not excited about it, but we seem to really be making progress.

Now, a question: Let's say hypothetically, a tumor has an SUV of 10. If in a second scan, it has an SUV of 7, is that a 30 percent reduction in the tumor? Or does that just mean the tumor is less hypermetabolic and we really can't correlate those numbers to a linear response. I have not been able to find this anywhere and it may be a much more difficult question than it appears on the surface.

Thank you all for your prayers and support. I hope I can return some of that love. And ronswife, you have been through so much and here you are trying to comfort and advise the newbies. Thank you so much for your kindness. I don't know how you do it, but I am glad you are here, still interacting with us.

Kim


Thank you for your very kind remarks Kim! Actually I find that it really helps ME to help others at this time. And I am GLAD to help out in any way that I can.

I feel that Ron would want me to cheer others on in their cancer battles, even though he lost his!

VERY happy for your husband's results!

:D
Husband Ron diagnosed with stage 4 colon cancer on 3/15/16, right after first colonoscopy at age 68. Had surgery to remove tumor on 3/31/16. Many mets on top and bottom of liver that are not resectable. Started chemo 4/28/16 using Fluorouracil (5-FU) and Irinotecan. Started Erbitux 5/26 on third chemo. Had very good results on 7/14 CT scan!! Treated with Avastin and Capecitabine 8/4/16. CT on 10/18 showed cancer growth. Now on FOLFOX. Placed in Hospice in early December and passed away 12/29/16.

jhocno197
Posts: 744
Joined: Mon May 11, 2015 9:33 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby jhocno197 » Mon Apr 17, 2017 9:54 pm

You can't correlate the numbers to a linear response.

Great news on shrinkage!!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17


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