Finally....some really great news!!!

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lovelife789
Posts: 114
Joined: Thu Aug 24, 2017 5:28 am

Re: Finally....some really great news!!!

Postby lovelife789 » Tue Sep 25, 2018 9:08 am

mpbser wrote:I just heard from the oncologist's assistant who informed me that an order had been put in for an MRI AND Chest CT. This is news to me. When I spoke with the scheduler to schedule the November MRI, I had no idea. Only an MRI has been scheduled. This is soooo frustrating!


My one lung nodule of 8mm lit up on PET CT with SUV uptake after it grew from 5mm. And I also had another 3mm lung nodule that has not presented any activity since its presence. I was told MRI offers higher clarity than CT and PET on all organs in the abdomen except lungs with discounted clarity on colon.

I know it's hard not to worry but don't get too worried. It's very common to have benign lung nodules!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 9:18 am

That makes sense, now that I have read many posts here about CTs finding lung nodules, including your stories, lovelife789. I wish I had known about the finding otherwise I would not have been so adamant about MRI although that's indeed what he needs for liver surveillance. I had no idea that doc had additionally ordered the Chest CT and such information sure would have been helpful weeks ago when I was scheduling a MRI appointment! Now I am worried he isn't going to be able to get both done in the very small window we have for back-to-back appointments in Boston (4 hr drive each way). His oncologist only being available Tuesdays and Fridays also makes scheduling a huge ordeal.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Tue Sep 25, 2018 2:26 pm

mpbser wrote:I just heard from the oncologist's assistant who informed me that an order had been put in for an MRI AND Chest CT. This is news to me. When I spoke with the scheduler to schedule the November MRI, I had no idea. Only an MRI has been scheduled. This is soooo frustrating!


I use the Brigham and Women's/DFCI EPIC portal and MGH uses the same thing so you can keep an eye on appointments and communications with the doctors. I think that you can also set up alerts so that you get an email when something changes. All of the records are there including billion. I visit my hospital portals from time to time just to make sure that I don't have any outstanding unpaid bills.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 4:42 pm

Ok, so when I broke the news to my husband this afternoon about yesterday - the news, the information, my reaction, my further research, my calming down, etc - he was absolutely livid that his MGH oncologist had not said anything to him. I prefaced the discussion with, "Did Dr. Zhu discuss the Chest CT scan that you had? I don't know if you are even aware that you had two CTs, one of chest and the other of abdomen." His reaction was, "WTF wasn't I told about this????????????" So, yeah, I go back to my original impression - he and the oncologist did NOT discuss this. I explained to him all the reasons why we should not jump to conclusions about this being mets. I told him that originally I was freaking out (oh yeah, was I!) but after all the reading I did yesterday, I was positive about this, that it was not cancer. He definitely relaxed after hearing this.

The local cancer center called me to schedule an appointment with his local oncologist. We made an appointment for October 10th (incidentally our anniversary - LOL) and are in the process of scheduling a Chest CT locally between now and that appointment.

I told my husband that at least we now don't have to wait until the end of November to figure out what this might be. I am always looking for the silver lining as it's my job to be strong for this man who I love to the end of the world and back.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Sat Oct 20, 2018 3:05 pm

I am posting on this thread I started because it shows my most recent rides on this rollercoaster. So, husband's Chest CT at the local hospital has been scheduled for Nov 5th. We will be going to Boston Nov 27th for abdominal MRI. I have been noticing that our dog has started to lie on my husband's belly as he did in the year or two before his diagnosis. That started to get me a little worried that he senses a recurrence (as I believe dogs can detect cancer). I put this out of my mind but now today I noticed my husband's breath has gotten bad again. It was like that when he was probably at the apex of the colon tumors and so much so that it was revolting, like the smell of death. The smell went away after his colon surgeries. But now, with these "lung nodules," I am getting worried again not knowing if he has mets to the lungs or not. He did have a head cold or flu recently so I hope it's just post-nasal drip. I am such a worry wort sometimes, but I grew up with the mantra "better be safe than sorry." We are going out to dinner tonight to celebrate some work I finished up this week, so I will try to enjoy and not hold my breath (pun intended) until after Nov 5th scan results.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Sat Oct 20, 2018 3:19 pm

mpbser wrote:I am posting on this thread I started because it shows my most recent rides on this rollercoaster. So, husband's Chest CT at the local hospital has been scheduled for Nov 5th. We will be going to Boston Nov 27th for abdominal MRI. I have been noticing that our dog has started to lie on my husband's belly as he did in the year or two before his diagnosis. That started to get me a little worried that he senses a recurrence (as I believe dogs can detect cancer). I put this out of my mind but now today I noticed my husband's breath has gotten bad again. It was like that when he was probably at the apex of the colon tumors and so much so that it was revolting, like the smell of death. The smell went away after his colon surgeries. But now, with these "lung nodules," I am getting worried again not knowing if he has mets to the lungs or not. He did have a head cold or flu recently so I hope it's just post-nasal drip. I am such a worry wort sometimes, but I grew up with the mantra "better be safe than sorry." We are going out to dinner tonight to celebrate some work I finished up this week, so I will try to enjoy and not hold my breath (pun intended) until after Nov 5th scan results.


My son works in Boston a few times a month and he mentioned that everyone down there was coughing. A friend in Boston doing chemo at B&W indicated that I shouldn't come if I'm sick and I was puzzled by the comment until my son mentioned that a lot of people down there were coughing. So there's a lot going around - which is why we got flu shots this year. I need to get back to dental appointments myself - I stopped them with chemo but that ended a while ago.

I hope that you have a good night out and that he doesn't have a recurrence.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Sat Oct 20, 2018 3:56 pm

Thanks, Mike, for your input! Yeah, hoping for the best, preparing for the worst is what I live by!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Sat Oct 20, 2018 4:59 pm

mpbser wrote:Thanks, Mike, for your input! Yeah, hoping for the best, preparing for the worst is what I live by!


Your perspective is helpful for cancer patients (and former cancer patients) in that it provides the perspective of a spouse.

Part of the recovery process is bodily changes. Surgery, chemo and radiation take a toll on the body and the body needs time to recover and I'm finding that there are changes in how things work or don't. There's always the worry of recurrence along with stuff like cold and flu season. I have a few funny things happening to me like feeling more hungry (explained by the colder weather), being more tired (could be work, or poor sleep - definitely need a new mattress) and other things that may have explanations. And yes, they can cause me to worry too. I don't know if worry is helpful but it's something that we do.

The decreased sunllight doesn't help either; and we have forced hot air which causes funny things with health too when heating season arrives, which it has.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Thu Nov 01, 2018 3:03 pm

Just popping in... My husband's chest CT is Monday and I'm getting scan-anxiety. I filed a really important brief a few days ago and I have a reply brief due November 12th. I don't need bad news right in the middle of this extremely important drafting. I'm wondering if he will get a call a few days after the scan, maybe the end of next week? I would like to finish up this document early so that any bad news can be weathered without being a total emotional mess.

Now I go back to work...
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Nov 06, 2018 5:27 pm

Yay! The Chest CT results say that the nodules are nothing more than scars as they have not changed at all from the May Chest CT (baseline). The radiologist also noted that nothing new can be seen in the liver, but of course we will know for sure when he has the MRI at the end of November. Still NED!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Tue Nov 06, 2018 5:30 pm

That is great news. And hopefully you guys can relax now.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Nohogirl
Posts: 69
Joined: Sun Oct 14, 2018 12:15 am

Re: Finally....some really great news!!!

Postby Nohogirl » Tue Nov 06, 2018 10:55 pm

Yaay!! So happy for you. I was following this thread and was waiting for the news. :)
04/18 DH 49 diag.stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm including entire rectum out
Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
Regression Grade 3
10/29 Started Folfox

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Wed Nov 07, 2018 8:14 am

I was actually so anxious that I worked really hard on a court filing last week in order to have it ready early (done before the scan results) before the filing deadline Monday the 12th. That way, if we got bad news, I wouldn't have distractions from my work. Now I have a few days off from work as a result to relax and enjoy! Going to go on a hike today that I have been wanting to do for at least three years. Sadly, I haven't had the time or weather for it but today looks to be beautiful.

Thank you for paying attention! I truly appreciate it!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Wed Nov 07, 2018 11:15 am

mpbser wrote:I was actually so anxious that I worked really hard on a court filing last week in order to have it ready early (done before the scan results) before the filing deadline Monday the 12th. That way, if we got bad news, I wouldn't have distractions from my work. Now I have a few days off from work as a result to relax and enjoy! Going to go on a hike today that I have been wanting to do for at least three years. Sadly, I haven't had the time or weather for it but today looks to be beautiful.

Thank you for paying attention! I truly appreciate it!


It's a nice day for a fall hike in New England - basically the sun comes out once or twice a week in the midst of a lot of rain.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal


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