Wives of husbands with Stage IV Colon Freaking Cancer

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Apr 18, 2017 12:47 pm

Hi Kim,

Thank You so much for sharing - such Good News!! :D
It sounds as your DH's tumors do Not like Folfirinox at all :evil:
You must be very pleased with these News!

Regarding your 'SUV question' - I have not read up on SUV before today, because my hubby has never had a test that has made me look for info. I see that member jhocno197 has replied, but I always need to see references to statements (due to bad experiences from other Forums) so I tried to find some. I found these two below. Maybe these references can help you investigate more to understand. (The last reference talk a lot about how to calculate)

Kind Regards
Lena


From (2016) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4880772/
"An experienced nuclear medicine physician interpreted the whole-body PET images, and was blinded for patient’s history, clinical findings, and conventional imaging.
It was considered the difference the two 18FDG-PET-CT for the early response assessment (delta ∆ SUV). In patients with multiple metastases, it was chosen randomly three to five lesions with 18FDG-PET-CT uptake. Patients with less than five lesions: all the lesions were evaluated. European Organization for Research and Treatment in Cancer (EORTC) criteria for PET-CT were used: partial response is when delta SUV drop more than 25%, disease progression is when delta SUV increases more than 25% or appearance of new metastatic lesions and stable disease when the SUV decrease be less than 25% or the increase be less than 25% (34).
A responder patient was defined as someone that had partial or complete response.
"

From (2017) http://jnm.snmjournals.org/content/58/4/523.full
"When acquired with careful attention to protocol, tumor SUV has a within-subject coefficient of variation of approximately 10%. In a response assessment setting, SUV reductions of more than 25% and increases of more than 33% are unlikely to be due to measurement variability. Broader margins may be required for sites with less rigorous protocol compliance, but in general, SUV is a highly repeatable imaging biomarker that is ideally suited to monitoring tumor response to treatment in individual patients."
"One issue that arises in test–retest studies of this kind is whether to analyze the data in the units of the original measurement (d expressed in SUV units) or in relative units (D expressed as a percentage). ... Characterizing repeatability in relative units is well suited to the way SUV is used in response assessment studies, which commonly quote percentage change in SUV relative to a baseline measurement. In addition to being easily interpreted, relative units are helpful when one is comparing literature reports that use different SUV formulations. SUV data derived using lean body mass as opposed to total body mass normalization have different ranges and are not directly comparable. However, the use of the relative difference D to characterize repeatability allows comparison of data from different reports irrespective of the SUV normalization schemes."
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Thu Apr 20, 2017 9:35 am

jhonco,

Again, I am in awe that those of you who have had so much pain and turmoil have the energy to help us newbies. Thank you.

LPL,

Very enlightening. Thank you for those links.
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly
June 12, 2019 At Peace

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Wed May 10, 2017 9:30 am

Hello friends,

We have our HIPEC consult at Wake Forrest on Friday. I am super nervous and can't really explain why. I really want to hear something like, "Yes, your husband is an excellent candidate for this surgery. We can't promise anything but there is good reason to be hopeful."

Any chance that will actually happen? His peritoneal disease seems to be in three spots: right of center mostly in omentum, left on center mostly in omentum, and one tumor on the surface of his liver.

I don't expect any of you to have the answers. I'm just thinking out loud.

-Kim
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly
June 12, 2019 At Peace

ronswife
Posts: 141
Joined: Mon Apr 25, 2016 12:25 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby ronswife » Wed May 10, 2017 2:29 pm

Hi Kim,

I am not knowledgeable at all about the questions you asked. I wish you the absolute BEST in treatment for your husband!

:)
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: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed May 10, 2017 4:25 pm

Dear Inorganic8/Kim,

My Very best wishes for a Good outcome at your HIPEC consult visit !

Am I hearing you correct? That you are being nerveus and can not really share that with your DH ?
If that is the case, I truly understand !! Please let me share:

Some time ago, neighbors came unexpectadely (that is how we meet nowadays due to me having had an accident with multiple fractures and having No strength to invite people - sorry this was just an added personal Sigh).
Anyway, I do not remember how this topic came up during this meeting but suddenly I heard my husband say that I was a hypocondriac :shock: . I said What??? He said: You are reading a lot about Health problems on line are you not?
Oh wow it felt like a knife in my stomach. I could not reply (that I am reading, trying to learn, the best to do if his(!) cancer will show it's ugly self again..). DH is on 'vacation' - NED for now - but I know (too much) and need to prepare for what might (probably) be in his/our future.
Do not get my wrong - I Love !! that he is Living Life ! But I suddenly felt/feel such great pain that I can not share my 'super nervous' (knowing/reading too much(?) feelings with him, instead I had to smile and say: Yes maybe I am a hypocondtriac?..

I do understand that You are "super nervous". Please know that I will be thinking about you and keeping my fingers crossed for you and your DH on Friday!!!
Kind Regards /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Wed May 10, 2017 6:47 pm

Hi Kim, Sending you hugs! We have CT Scan on Friday and of course I want to hear "Ok, NOW we get serious with other stuff" unlike what we heard 6 months ago. May have to go to other Dr. for that and I'm prepared to suggest that.

Hi Lena, I read and read and read too. Hoping to find some little something that will help DH.

Prayers for all,

Melissa
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Sun May 14, 2017 2:28 pm

Well NUTS!!!! CT Scan did not look as good as we had hoped. Lung nodes have grown slightly. Mention of a tumor between the small intestine and large intestine which has never been noted before. The liver tumors do appear to be stable but the CEA is up. We meet with oncologist on Tuesday and I guess he will think about switching us off Folfox and onto something else. Am seriously considering asking if we can get into the "Sleen trial" as NIH is only about 30 minutes from us. I guess the other option is seeing what MSK thinks. Not sure what to do at all.

M :cry:
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

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LPL
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Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Sun May 14, 2017 6:28 pm

Hi mhf1986/Melissa,
Not what you wanted to hear - I understand that. But maybe things will be explained by your Onc on Tuesday? For example CEA up and the lung nodes. Maybe that can be reactions to ongoing chemo? When my hubby was on chemo they did not check CEA (I belive on purpose) and his liver tumors that showed 'No change' in size turned out to include mostly 'dead' cancer cells when they were checked after surgery. Even though the size had not changed.. (actually one had grown a little and the other had gotten a little smaller = No change).
That tumor 'thing' "between the small and large intestine" - I hope you will get more info about that and all things explained on Tuesday.
Will be thinking of you and your DH !
Kind Regards /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

SarahS
Posts: 49
Joined: Sat Mar 11, 2017 12:44 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby SarahS » Sun May 14, 2017 9:44 pm

Hi Melissa

I am sorry to hear that your latest scan was somewhat disappointing for you, I know the expectation we have before a scan especially if CEA has been dropping
That said, it doesn't sound all that bad,
I hope you will get some more useful information and a plan for going forward from your onc on Tuesday.
If this is progression why not apply for the NIH trial, I am pretty sure that's what I would do ,especially as you live so close. We actually tried applying to that trial very early on in our journey but were told we would need to have tried at least one chemo regime and had it fail.
Thinking of you and wishing you comfort with your and your oncs plans moving forward. Stay strong and positive :)
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 G12C MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

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

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Mon May 15, 2017 3:59 pm

Dear Inorganic8/Kim,
Thinking about you.
I hope you had a Good HIPEC consult visit.
Kind Regards /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Tue May 16, 2017 5:07 pm

Hello Lena and Sarah and Kim and all in this boat:

Not sure about today. Very odd in a number of ways. Oncologist wants another CT scan in July as he said the measurements of the lung spots could be off, that to have every spot increase by 1mm could simply be a measuring issue because they were identified as calcifications back in October. That's weird but at least he's not in a panic. So we continue with FOLFOX+Avastin. He might remove the OX in a month due to neuropathy but getting through 6 or 7 months is good. If the spots do show growth he's considering a switch to FOLFIRI with addition of an EGFR (sp?) drug. Then Stivarga or Lonsurf. Then clinical trial after that, maybe.

No mention of proton therapy, cyberknife, embolization, or spheres to help. DH has agreed to ask about 1 in June and 1 in July to see what the guy says.

But the strangest comment was...he doesn't believe immunotherapy really works on GI cancers. I get that MSI is more likely to show response but this isn't immunotherapy the cutting edge research? He was not kind to Keytruda or Opdivo. I"m not getting the idea he's be willing to off-label-usage with anything either.

So the plan is to see what the CT scan holds in July, get his opinion, and then get a 2nd opinion, probably at Georgetown, maybe at MSK, to see if the plan holds water.

Kim, how did the HIPEC conversation go? Sarah, have you been to MSK yet? Lena, thanks for your support!

Melissa
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby inorganic8 » Wed May 17, 2017 9:31 am

Hello friends,

Lena, yeah, you get it. I'm trying to keep most of my anxieties to myself. I don't want DH to have to talk about cancer constantly.

Melissa, all I can say is that it sounds like you've had a crazy week. I think there might be something to the measurement comment. It does seem odd that everything increased in size by the same amount. You'd think there would be some randomness in a biological system, right? I'm hoping that you find out this is proof positive of stability or better.

Sarah, I hope you get to MSK soon.

Ok, so we went to Wake Forrest for a second opinion. It was a complete disaster. DH didn't want to go in the first place but I talked him into it. I told him I was positive I was right about this and Wake Forrest was where he needed to be. Well, I have been punished for my hubris.

The surgeon probably spent less than 20 minutes with us. The sum total of his wisdom was surgery will not help DH, DH has 22 months to live, and the PET scans we've had probably don't give the full picture because they only look at the surface of the liver and can't see into the liver. That means their are probably lots of tumors in his liver that will spread to his lungs soon. Now, I'm no radiologist, but I thought a CT could see into solid organs. (DH has had both CT and PET scans). I did some research (because that's what I do) and found that CT scans are very good at picking up small lesions in solid organs, but they are not good differentiating between what is malignant and what is benign.

DH got a CT when this all started. I faxed those results to Wake Forrest. DH has had two PET scans at Moffit, which Moffit scanned and sent to Wake Forrest. So I see two possibilities. The Wake Forrest surgeon is right and we have not had the appropriate scans, or, he only looked at the information from Moffit and not any of the information I sent. I'm going with that second one. In denial? Maybe, but I don't see any evidence that DH has multiple tumors inside the liver. He appears to be down to one liver tumor on the surface. The Moffitt surgeon thinks so.

So, no HIPEC, or anything else at Wake Forrest. Maybe no HIPEC at all. The Wake Forrest surgeon was sure to share how difficult the surgery was, how long the recovery was, and the morbidity and mortality risk. I suppose that is his job. DH is now thoroughly terrified of HIPEC.

The bright spot in all of this was Wake Forrest Doc thinks the current course of chemo is the way to go. Agreement on this one issue is probably a good thing.

Ugh!

Oh, and after we left Wake Forrest, I apologized to DH for dragging him up to North Carolina and wasting two days of his time. His response can be paraphrased as follows: "This wasn't a waste of time. We did what you thought was best and now we have more information. We have more questions to ask at Moffitt." Yeah, he's awesome.

-Kim
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly
June 12, 2019 At Peace

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu May 18, 2017 3:27 am

Hi Kim,

So sorry to hear how bad your 2nd opinion visit was - to write polite words.. that Surgeon at Wake Forrest did Not sound like a nice doctor!! :evil: First of all to give your DH an 'expire date' - No one knows that!!! This is something I have read here on Colon Club many many times and often described as a sign of a bad doctor!!! Secondly did he say about your DH's liver. "there are probably lots of tumors in his liver that will spread to his lungs soon." - did he say that?? Why? Ugh! what a terrible doctor.

I totally agree with you that he can not have looked at all the tests you had sent. A CT does not only show tumors on the outside of the liver. I speak as a 'non-professional' but that is what I have read and also heard from Hubby's Surgeon, and also the Onc showed us hubby's CT on the screen.

Here is one site with info http://www.sirtex.com/us/patients/diagn ... er-tumors/

"A CT scan makes a series of x-rays of areas inside the body. This series of cross sections or "slices" through the part of the body being scanned are used to build a very detailed three-dimensional picture of the inside of the body. This type of scan may be used to look for signs of cancer in your liver (using a CT scan of your abdomen) and for cancer in other parts of your body. A CT scan can give a very accurate picture of the location and size of a tumor. "

"An MRI scan is similar to a CT scan but uses magnetic fields instead of x-rays to build up a series of cross sections through the part of the body being scanned. An MRI scan will be clearer than a CT scan for some types of tissues. "

I included that quote about MRI because that was a test DH's Surgeon wanted to add after the CT and right before hubby's surgery (the resection of the Colon tumor). The CT had shown 1 liver met and the MRI showed 3 liver mets - actually 1 of the 2 'new' tumors found on the MRI was found on the outside(!) of the liver. The protocol in Europe is, as I understand it, that with only 1 liver met and if resectable it can be removed at the same time as the primary Colon tumor. If 2 or more they give 4-6 chemo sessions before a liver met surgery.

Good to hear that you got a confirmation regarding the ongoing chemo'cocktail' and great to hear your DH's words: "... now we have more information. We have more questions to ask at Moffitt."

To get as much information as possible must be good. Is it maybe possible to just send papers to another hospital for a 3rd opinion? Not having to physically show up.

All the best to you /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Thu May 18, 2017 5:46 am

Hi Melissa,

I agree with Kim regarding what your doctor said, the lung spot measurement comment.
Best wishes for a good result on the CT in July and with your plan getting more/other's opinions after that.

Is it maybe so that your DH's doctor's view "doesn't believe immunotherapy really works on GI cancers" is due to him waiting for more research/results? Or?
Is it possible for you to send additional questions to him? to make him explain why. Maybe you can attach and make him comment on good results from research you have found.

Regarding neuropathy and removing 'the ox in Folfox' - my hubby had 7 treatments with full dose, #8-9 with half dose, and for #10-12 they totally removed the 'ox'. He really felt a good difference already with half dose. He had his #12 in the middle of Feb and he is not complaining about neuropathy now, no problem walking or using his hands. He is still complaining about his nails though, they are sort of soft and brake very easy. Nails do grow very slow so that will get better I hope.

All the best to you /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Mon May 22, 2017 7:20 am

Hi Melissa,
Regarding your DH's doctor's negative view about Immunotherapy - I was just going to ask if you had seen what DK37/Tom had written about Immunotherapy here viewtopic.php?f=1&t=57963
and here https://adventuresinlivingterminallyopt ... anti-pdl1/
Then I saw a Melissa posting a comment there in his Blog. It is you - yes?
It feels really positiv what he write and as I understood it, that he think more clinical trials/studies for MSS CRC will come this year.
All the best to everyone! /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets


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